Hi everyone,
I have three teenage daughters, my oldest is nearly 18, my middle one is 16, and my youngest one is nearly 15.
My oldest daughter has been complaining about occasional diarrhea/stomach pains/cramps every few weeks for the past few months or so. Nothing that prompted us to go see the pediatrician as it would usually resolve and my daughter would say that it was probably something she ate.
My middle one has had headaches since the age of 3 or 4, had MRI and CT scans at that time and since, and no doctor ever found out why she was having headaches. When she did a gluten-free trial (at the time I started leaving away gluten in fall last year) her chronic headaches left, like magic, and she had a lot more energy. However, she has not been very consistent. Sometimes she will declare that it's worth it to have a headache in order to eat a donut or some such food when she is with her friends (since celiac blood tests done by the pediatrician had been negative and no other tests had been conducted so far, I would usually just let it go and think that was up to her to decide). Once in a while, she also reports diarrhea/stomach pains/nausea.
My youngest one seems to be pretty much fine. She rarely complains about stomach pains or diarrhea. (I would think any child complains about a stomachache once in a while, right?)
A few weeks ago, when both my oldest and my middle one were complaining again about diarrhea, I asked them whether they wanted to have Enterolab testing done. They both said yes (I also asked my youngest one but she said no). Two weeks ago I had to drive my oldest one to school because she missed the bus because of diarrhea. And last week she texted me from school complaining about terrible cramps and asking when those results would come in. Well, they did come in at the end of last week, and I am completely shocked. I totally expected gluten, kind of expected dairy, absolutely did not expect eggs or soy (I am as stunned as when mine came in).
I will list all of our results so you can see them:
My results (November 2014):
A-2) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 58 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 26 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 31 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
My oldest daughter (April 2015):
A-2) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 34 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 20 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 42 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 16 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
My middle one (April 2015):
A-2) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 35 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 20 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 38 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)
This test obviously provided some answers but also presented a lot of questions to my daughters and me.
I have not taken them to the pediatrician or the gastroenterologist about this. Should I? Do they need a colonoscopy? How likely is it that they have microscopic colitis? Or should they just leave away all of the above and see if their symptoms resolve?
According to Dr. Fine's website, the majority of people have a genetic predisposition to gluten sensitivity. Does that mean that the girls' gluten sensitivity predisposition has switched to active gluten sensitivity if they have an elevated antigliadin IgA count? And what implications does it have, if they decide that a donut once in a while is worth having some headache/diarrhea? Will this damage their intestine? Can this create microscopic colitis down the road? Is this possible???
Also, can the other three, dairy, eggs, and soy, also have a damaging effect on their intestine? Is this just about dealing with diarrhea/not feeling well, or can it create inflammation and damage their health? I know gluten can cause all kinds of neurological damage, not just intestinal one, but what about dairy, eggs and soy?
I have been super strict with my diet, just because I was so sick and I want to be healthy again. How strict do they have to be? I feel so bad for them. I think it is so much harder at their age, going out with friends, going off to college, etc. Gluten free is not too hard, I find. So many restaurants are offering gluten free options and I know that the college my daughter will be attending offers gluten free food. They also offer Vegan food options, which would eliminate dairy and eggs. But the combination of all four is just really tough!!! Should she pay most attention to gluten free and make that her priority and try to decrease her intake of dairy, eggs and soy as much as possible? She has been a vegetarian since last summer and I told her that she would have to give that up. If she has to leave away dairy, eggs, and soy (all of which she loved), there is no way she can have enough protein in her diet without eating animal protein. She is okay with eating fish and chicken. I don't think red meat is a requirement, is it? She specifically asked me that.
Also, if soy shows up in the results, do they have to leave away legumes and peanuts? Should they not eat peanut butter anymore?
Obviously, now my youngest one is wondering if she also has these food intolerances. The thought scares her because she loves her gluten foods!
As always, I am looking forward to your input!!!
Love, Patricia
Enterolab results of my girls
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Patricia,
What can I say? You probably already know the answers, but here's my opinion, FWIW:
If they are producing antibodies (as shown by their results to the EnteroLab tests), then their immune system is already reacting to those foods. That doesn't mean that they will immediately develop celiac disease or MC, but it does mean that as the inflammation slowly increases, eventually it will probably grow to reach a level at which it will exceed their personal tolerance threshold on a chronic basis, and they will begin to react continuously, as either celiac disease or MC (or both) reach the final development stages. But that may be years away, at this point.
The worst risk of damage will always be due to gluten, because gluten slowly destroys the villi in the small intestine for anyone who has a celiac gene. The damage from the other foods is not nearly as likely to be as extensive. That does not mean that those foods cannot cause symptoms, because they can, and the symptoms can be just as severe as the symptoms of gluten sensitivity. It just means that the damage from those other foods is not as likely to be long-term — it can heal faster if the foods are avoided.
So if I were in their shoes, I would totally avoid gluten (because if they don't, they will almost surely develop celiac disease), and I would consider avoiding the other foods on an as-needed basis. IOW, if soy causes definite problems, then avoid it. Otherwise, don't worry about it until the time comes when they may not have any other choice but to avoid it. It might be that if they faithfully avoid gluten 100 % of the time, the other foods may not cause any significant problems, but that will depend on a lot of unknowns. If they are lucky, this might work, at least for a while, but of course there are never any guarantees, unfortunately.
Obviously the safest policy would be to avoid all reactive foods, but I realize how difficult that would be at their ages. The problem is, even if they change their diets to eliminate those foods, they will still be sensitive to them, and their sensitivity will probably progress at an even faster rate than it would if they continue to eat the foods. It's hard to win, because we cannot overrule our genes. C'est la vie.
Love,
Tex
What can I say? You probably already know the answers, but here's my opinion, FWIW:
If they are producing antibodies (as shown by their results to the EnteroLab tests), then their immune system is already reacting to those foods. That doesn't mean that they will immediately develop celiac disease or MC, but it does mean that as the inflammation slowly increases, eventually it will probably grow to reach a level at which it will exceed their personal tolerance threshold on a chronic basis, and they will begin to react continuously, as either celiac disease or MC (or both) reach the final development stages. But that may be years away, at this point.
The worst risk of damage will always be due to gluten, because gluten slowly destroys the villi in the small intestine for anyone who has a celiac gene. The damage from the other foods is not nearly as likely to be as extensive. That does not mean that those foods cannot cause symptoms, because they can, and the symptoms can be just as severe as the symptoms of gluten sensitivity. It just means that the damage from those other foods is not as likely to be long-term — it can heal faster if the foods are avoided.
So if I were in their shoes, I would totally avoid gluten (because if they don't, they will almost surely develop celiac disease), and I would consider avoiding the other foods on an as-needed basis. IOW, if soy causes definite problems, then avoid it. Otherwise, don't worry about it until the time comes when they may not have any other choice but to avoid it. It might be that if they faithfully avoid gluten 100 % of the time, the other foods may not cause any significant problems, but that will depend on a lot of unknowns. If they are lucky, this might work, at least for a while, but of course there are never any guarantees, unfortunately.
Obviously the safest policy would be to avoid all reactive foods, but I realize how difficult that would be at their ages. The problem is, even if they change their diets to eliminate those foods, they will still be sensitive to them, and their sensitivity will probably progress at an even faster rate than it would if they continue to eat the foods. It's hard to win, because we cannot overrule our genes. C'est la vie.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I am so sorry to hear about your daughter's results. I have two grown daughters also and know how difficult it is for them to avoid certain foods. I suspect my older one is sensitive to gluten ( skin rash and headaches) and felt better when she stayed away from it for a month, but has since went back to eating it and feels fine for now. I wish she would heed my advice, but alas, I can not control her diet. She's 25. My younger one reacts to lactose. She pretty much stays away from too much of it, but I worry that this is only the beginning of problems down the road.
Like Tex said, if they can completely stay way from gluten, that would be most important. Once that is out of their systems ( about four months), the other food intolerances will show themselves and then they can make the decision to take out what else is bothering them.
Try not to beat yourself up. I too feel somewhat responsible for passing this on, but hey, we didn't know at the time.
Good luck to them
Leah
Like Tex said, if they can completely stay way from gluten, that would be most important. Once that is out of their systems ( about four months), the other food intolerances will show themselves and then they can make the decision to take out what else is bothering them.
Try not to beat yourself up. I too feel somewhat responsible for passing this on, but hey, we didn't know at the time.
Good luck to them
Leah
Hi Patricia,
I concur with Tex. There is a huge genetic component to gluten issues by the way. My Mom is celiac and has been diagnosed for about 35 years. She was not told to tell her children about the genetic component so I ate gluten up until around age 50 when I was diagnosed with MC.
Re: your questions.
1. No to colonoscopy. I clearly had gluten issues in my 40's....severe joint pain after eating a plate of spaghetti and memory issues after a lot of French bread and wine. I think a colonoscopy in my 40's would have been meaningless even though I was having gluten issues.
2. Yes to going GF. I live in a college town. 50,000 students in the university and 20,000 students in the community college. I meet students all the time that have been GF for quite some time. IT is no big deal in a college environment.
3. Life is about living. There are too many good parties in a college town with really good cheeses to give up dairy. I agree with Tex....have them give up gluten. Don't worry about anything unless they have ongoing issues and then give up soy and reevaluate eggs and dairy if needed. Or maybe low dairy low egg. STick to the really good cheeses but say no to daily yogurt and don't push the 4 cups of milk a day. I'm rambling here....no gluten....don't sweat the rest.
Just my opinion.
PS. Migraines are heavily connected to gluten.
Brandy
I concur with Tex. There is a huge genetic component to gluten issues by the way. My Mom is celiac and has been diagnosed for about 35 years. She was not told to tell her children about the genetic component so I ate gluten up until around age 50 when I was diagnosed with MC.
Re: your questions.
1. No to colonoscopy. I clearly had gluten issues in my 40's....severe joint pain after eating a plate of spaghetti and memory issues after a lot of French bread and wine. I think a colonoscopy in my 40's would have been meaningless even though I was having gluten issues.
2. Yes to going GF. I live in a college town. 50,000 students in the university and 20,000 students in the community college. I meet students all the time that have been GF for quite some time. IT is no big deal in a college environment.
3. Life is about living. There are too many good parties in a college town with really good cheeses to give up dairy. I agree with Tex....have them give up gluten. Don't worry about anything unless they have ongoing issues and then give up soy and reevaluate eggs and dairy if needed. Or maybe low dairy low egg. STick to the really good cheeses but say no to daily yogurt and don't push the 4 cups of milk a day. I'm rambling here....no gluten....don't sweat the rest.
Just my opinion.
PS. Migraines are heavily connected to gluten.
Brandy
Patricia,
Brandy and I definitely view the dairy problem the same way. Her explanation of what to do about cheese, and to avoid daily yogurt, etc., was perfect, IMO.
And I agree that a colonoscopy at this point would be pointless, and it might even trigger MC.
And the only times in my life when I had migraines was when I was eating gluten, or my diet was cross-contaminated with gluten.
Love,
Tex
Brandy and I definitely view the dairy problem the same way. Her explanation of what to do about cheese, and to avoid daily yogurt, etc., was perfect, IMO.
And I agree that a colonoscopy at this point would be pointless, and it might even trigger MC.
And the only times in my life when I had migraines was when I was eating gluten, or my diet was cross-contaminated with gluten.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Wow!!, pretty strong indicators hey.....
The other thing to investigate, for times they can't avoid gluten, getting digestive enzymes or something similar. It doesn't stop villi damage, but it will minimise cramping, and D type reactions....
The same for things like dairy, if they are having symptoms when they have dairy in social situations, taking digestion enzymes will help minimise d type reactions.
I would encourage Vit D3 supplementation to help their bodies with the inflammation that is occurring...
The other thing to investigate, for times they can't avoid gluten, getting digestive enzymes or something similar. It doesn't stop villi damage, but it will minimise cramping, and D type reactions....
The same for things like dairy, if they are having symptoms when they have dairy in social situations, taking digestion enzymes will help minimise d type reactions.
I would encourage Vit D3 supplementation to help their bodies with the inflammation that is occurring...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you so much to all of you! You guys are just wonderful!!!! 
It is so nice to be able to count on such knowledgable friends whenever I need to!
Your info and advice made a lot of sense. It definitely makes it easier to be able to focus on gluten. I think the girls' compliance will also be a lot higher if they know what their priority is than if they have to try to leave everything away. Luckily, they are living now, at a time when gluten free is nothing out of the ordinary anymore, and not twenty years ago. I passed your advice along and told them they had to be 100% gluten free, no cheating, as strict as their friend who has celiac sprue. But that there was a good chance they could tolerate some dairy/eggs/soy, if they were that consistent about the gluten. They liked the advice (a lot less restrictive than what they expected after seeing the Enterolab results).
Great idea about the vitamin D3. My pediatrician already told one of the girls to take it because she was deficient (the other ones were not tested). I will make sure they all take it. The pediatrician's office said not to take more than 2000 IU at their age.
Gabes: what digestive enzymes would you recommend?
Love, Patricia
It is so nice to be able to count on such knowledgable friends whenever I need to!
Your info and advice made a lot of sense. It definitely makes it easier to be able to focus on gluten. I think the girls' compliance will also be a lot higher if they know what their priority is than if they have to try to leave everything away. Luckily, they are living now, at a time when gluten free is nothing out of the ordinary anymore, and not twenty years ago. I passed your advice along and told them they had to be 100% gluten free, no cheating, as strict as their friend who has celiac sprue. But that there was a good chance they could tolerate some dairy/eggs/soy, if they were that consistent about the gluten. They liked the advice (a lot less restrictive than what they expected after seeing the Enterolab results).
Great idea about the vitamin D3. My pediatrician already told one of the girls to take it because she was deficient (the other ones were not tested). I will make sure they all take it. The pediatrician's office said not to take more than 2000 IU at their age.
Gabes: what digestive enzymes would you recommend?
Love, Patricia
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I will have to check about the digestive enzymes as the brands/types are different in USA to Aus.
Rather than a generalised enzyme, i would suggest specific one. I know there is one for dairy /lactose. And I am pretty sure there is one that is just for gluten.
The other suggestion is teaching them to listen to their bodies.
If they are having symptoms and feeling tired, eat mushy, bland, easy to digest foods (well cooked veges, soups, stews type thing) let the gut recover. Having these things based on home made bone broth will help a lot....
Plan for social events, eat meals with minimal triggers for a few days before and after social events.
The other affordable, low trigger option for them is protein shakes, based on rice.
Having some safe rice protein drink before a social event, they won't eat as much... They can still be social but limit how much food they have... Without feeling hungry.
The other suggestion is a little bit of Magnesium - this will optimise the Vit D, and help healing, optimise health of muscles etc. the lotion/spray is best option
Rather than a generalised enzyme, i would suggest specific one. I know there is one for dairy /lactose. And I am pretty sure there is one that is just for gluten.
The other suggestion is teaching them to listen to their bodies.
If they are having symptoms and feeling tired, eat mushy, bland, easy to digest foods (well cooked veges, soups, stews type thing) let the gut recover. Having these things based on home made bone broth will help a lot....
Plan for social events, eat meals with minimal triggers for a few days before and after social events.
The other affordable, low trigger option for them is protein shakes, based on rice.
Having some safe rice protein drink before a social event, they won't eat as much... They can still be social but limit how much food they have... Without feeling hungry.
The other suggestion is a little bit of Magnesium - this will optimise the Vit D, and help healing, optimise health of muscles etc. the lotion/spray is best option
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Patricia,
To be honest I don't have much faith in products of this type, but everyone is always hoping that they will find a pill to cure them, so for your information, here is an example of one such product that claims to provide enzymes to help digest both gluten and casein.
http://www.iherb.com/product-reviews/En ... /6279/?p=1
Remember that these will not totally prevent intestinal damage from gluten. They are best used when eating somewhere where you cannot be sure that the chef/cook truly understands all the details of gluten-free food and/or you suspect that there might be a risk of cross-contamination with gluten. IOW, it will help to prevent symptoms from a little gluten, but it shouldn't be expected to protect anyone from eating a pizza loaded with gluten, for example. Ideally they should be taken before the meal, but sometimes they will even help to minimize a reaction if taken soon enough after symptoms begin to appear.
Here are a couple more products (and there are others). Your pharmacist could probably recommend some. I have no experience with any of these, and personally I would never take any of them, but some people insist that they help.
http://www.cvs.com/shop/health-medicine ... uid-878021
ehttp://www.amazon.com/Foods-Gluten-Digest-Enzy ... B003O1TZHQ
To show how overrated most of these products are however, please read this:
http://celiacdisease.about.com/od/faqs/ ... Gluten.htm
Love,
Tex
To be honest I don't have much faith in products of this type, but everyone is always hoping that they will find a pill to cure them, so for your information, here is an example of one such product that claims to provide enzymes to help digest both gluten and casein.
http://www.iherb.com/product-reviews/En ... /6279/?p=1
Remember that these will not totally prevent intestinal damage from gluten. They are best used when eating somewhere where you cannot be sure that the chef/cook truly understands all the details of gluten-free food and/or you suspect that there might be a risk of cross-contamination with gluten. IOW, it will help to prevent symptoms from a little gluten, but it shouldn't be expected to protect anyone from eating a pizza loaded with gluten, for example. Ideally they should be taken before the meal, but sometimes they will even help to minimize a reaction if taken soon enough after symptoms begin to appear.
Here are a couple more products (and there are others). Your pharmacist could probably recommend some. I have no experience with any of these, and personally I would never take any of them, but some people insist that they help.
http://www.cvs.com/shop/health-medicine ... uid-878021
ehttp://www.amazon.com/Foods-Gluten-Digest-Enzy ... B003O1TZHQ
To show how overrated most of these products are however, please read this:
http://celiacdisease.about.com/od/faqs/ ... Gluten.htm
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I decided to add to this thread since it might make it easier to understand. It has been a good two years since the last post. I am sorry about the lengthy update but I really don't know what to tell my daughter!
In the meantime:
- My oldest one: became a vegan two years ago and strictly left away gluten, dairy, eggs, fish, meat. She continued to have soy (tofu, edamame, soy sauce, and hidden soy) but seemed to do okay UNTIL NOW, unfortunately, not anymore (see below)
- My middle one: leaves away gluten all the time, dairy nearly all of the time (she does react to dairy with stomachache and diarrhea).
- My youngest one: ended up being tested for the big four in August 2015 because she also had a lot of stomachaches and diarrhea, also showed antibodies to all four. She is strictly gluten free, initially, she was also dairy free because she reacted to dairy, but now she seems to be okay if she has a bit of dairy here and there (for example a scoop of regular ice cream). She will not have a glass of milk or a any drink with dairy in it.
This spring/early summer:
- My middle one had a lot of stomachaches shortly after eating. I told her that beside being strictly gluten and dairy free she should maybe also leave away eggs or soy. The past few weeks she left away eggs (which she was eating frequently), she seems to be doing better now and stopped complaining about stomachaches after eating. I hope it stays that way!
My oldest one (20) finished her second year of college (in Maine, 700 miles from where I live) this spring. At school, she made herself a lot of smoothies but noticed that she started reacting to strawberries. So she left the strawberries away. In June, back at home, she noticed that she started reacting to onions and garlic, then it was spinach, it seemed like she was accumulating all kinds of intolerances. She started complaining about stomachaches shortly after eating, abdominal cramps, diarrhea every few days. Very much the way I felt when I was diagnosed with MC three years ago. She also felt that she was reacting to soy and became very concerned that as a vegan without soy she would not get enough protein. I agreed with her assessment and encouraged her to at least consider eating wild-caught fish or seafood if she did not want to eat any meat. After having been a vegetarian for three years and a vegan for two out of those three years she started eating cod (with a heavy heart). Three weeks ago she started an elimination diet just because it became so hard to figure out what she could or could not eat without reacting to it. She initially ate cod and sweet potatoes but after a while she felt that she was reacting to sweet potatoes (which I do, too). So she started eating rice or regular potatoes (the red skinned ones) with cod. I thought, and hoped, that we would see some progress fairly soon. But she still has diarrhea every few days (sometimes half the night). She has half a banana every so often (does not hurt her stomach or seem to cause any problems).
We ordered the 11 antigenic food test from Enterolab, and here are the results which arrived a few days ago:
C-1) Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 14 Units (Normal Range is less than 10 Units)
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: Beef, Chicken, Pork
Food to which there was some immunological reactivity (1+): Corn, Rice, Tuna, Almond, Cashew, Walnut, White potato
Food to which there was moderate immunological reactivity (2+): Oat
Food to which there was significant and/or the most immunological reactivity (3+): None
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Cashew
Nut toward which you displayed the least immunologic reactivity: Walnut
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.
TEST INTERPRETATION(S):
Interpretation of Mean Value 11 Antigenic Foods: With respect to the mean value of the 11 foods tested, overall, there was only a modest amount of immunological reactivity detected to these antigenic foods in terms of fecal IgA production.
It was a bit of a shock to see that only meat is in the 0 column, not what she wanted to see. I have to say, I am surprised that tuna was not in the 0 column since she has not eaten tuna in years. We were also shocked that rice and white potato are in the 1+ column. I am glad they are not in the 2+ or 3+ column and that nothing shows up in the 3+ column and only oats (that she doesn't eat anyway) in the 2+ column.
My biggest question right now is: what should she eat??? She is okay with eating cod every day, she is not okay with eating meat. Is she allowed to eat rice (she has always been a very big rice eater and has a rice cooker at school)? And potatoes? So far, she has rice or potatoes with each meal. Is that still okay? Or should she leave them away? But what would she eat? She definitely does not want to eat fish more than twice a day. I am not sure if veggies are good right now with the fiber. So what does that leave?
Even though I have been tinkering with my own diet successfully for the past three years, I am at a loss as to what I should recommend to her.
When she spent again half the night in the bathroom early this week I decided that enough is enough and she should go see my gastroenterologist (especially since my daughter and I are both quite worried about her return to college in two weeks). She got in with the PA since he had a cancellation. He seemed very nice, was interested in the Enterolab results, did not dismiss them at all. He ordered an ultrasound of the gallbladder, an upper endoscopy and a colonoscopy to either confirm or rule out microscopic colitis or see if she has something else. He said that her having diarrhea at night pretty much rules out IBS.
She has complained about acid reflux this week for the very first time. I am worried that they might put her on a PPI.
I have to say, I am relieved that she will have the testing done this week, prior to her return to school. My gastroenterologist will do the colonoscopy and upper endoscopy. I am glad about that because he is very experienced, thorough and detail-oriented. Initially, when I was sick, he thought about MC before I even had all the symptoms and made sure to take plenty of biopsies.
My daughter has been emailing with the food service at her school and they are really super nice. They are excellent about labeling all the foods they offer whether they contain gluten, eggs, dairy, soy, are vegetarian or vegan (even at an outdoor event for parents I noticed that). They are super careful about cross contamination, too. They already promised my daughter that they will cook for her whatever she needs, if it's potatoes, rice, and cod, that's what they will cook. If she needs to adjust her diet, they will cook for her whatever she needs at the time, which is very nice. At the same time it is definitely harder at school than here at home. And even here I do not know what to tell her.
What would you recommend that she eat until she gets the results from the colonoscopy/biopsies? Should she eat rice and potatoes, and if yes, how often? She thinks that she tolerates potatoes better than rice. But I am afraid if she eats potatoes with every meal her potato intolerance might get worse. Sometimes, she doesn't want to eat because she is afraid it's going to make things worse. Obviously, that is not an option either.
Love, Patricia
In the meantime:
- My oldest one: became a vegan two years ago and strictly left away gluten, dairy, eggs, fish, meat. She continued to have soy (tofu, edamame, soy sauce, and hidden soy) but seemed to do okay UNTIL NOW, unfortunately, not anymore (see below)
- My middle one: leaves away gluten all the time, dairy nearly all of the time (she does react to dairy with stomachache and diarrhea).
- My youngest one: ended up being tested for the big four in August 2015 because she also had a lot of stomachaches and diarrhea, also showed antibodies to all four. She is strictly gluten free, initially, she was also dairy free because she reacted to dairy, but now she seems to be okay if she has a bit of dairy here and there (for example a scoop of regular ice cream). She will not have a glass of milk or a any drink with dairy in it.
This spring/early summer:
- My middle one had a lot of stomachaches shortly after eating. I told her that beside being strictly gluten and dairy free she should maybe also leave away eggs or soy. The past few weeks she left away eggs (which she was eating frequently), she seems to be doing better now and stopped complaining about stomachaches after eating. I hope it stays that way!
My oldest one (20) finished her second year of college (in Maine, 700 miles from where I live) this spring. At school, she made herself a lot of smoothies but noticed that she started reacting to strawberries. So she left the strawberries away. In June, back at home, she noticed that she started reacting to onions and garlic, then it was spinach, it seemed like she was accumulating all kinds of intolerances. She started complaining about stomachaches shortly after eating, abdominal cramps, diarrhea every few days. Very much the way I felt when I was diagnosed with MC three years ago. She also felt that she was reacting to soy and became very concerned that as a vegan without soy she would not get enough protein. I agreed with her assessment and encouraged her to at least consider eating wild-caught fish or seafood if she did not want to eat any meat. After having been a vegetarian for three years and a vegan for two out of those three years she started eating cod (with a heavy heart). Three weeks ago she started an elimination diet just because it became so hard to figure out what she could or could not eat without reacting to it. She initially ate cod and sweet potatoes but after a while she felt that she was reacting to sweet potatoes (which I do, too). So she started eating rice or regular potatoes (the red skinned ones) with cod. I thought, and hoped, that we would see some progress fairly soon. But she still has diarrhea every few days (sometimes half the night). She has half a banana every so often (does not hurt her stomach or seem to cause any problems).
We ordered the 11 antigenic food test from Enterolab, and here are the results which arrived a few days ago:
C-1) Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 14 Units (Normal Range is less than 10 Units)
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: Beef, Chicken, Pork
Food to which there was some immunological reactivity (1+): Corn, Rice, Tuna, Almond, Cashew, Walnut, White potato
Food to which there was moderate immunological reactivity (2+): Oat
Food to which there was significant and/or the most immunological reactivity (3+): None
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Cashew
Nut toward which you displayed the least immunologic reactivity: Walnut
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.
TEST INTERPRETATION(S):
Interpretation of Mean Value 11 Antigenic Foods: With respect to the mean value of the 11 foods tested, overall, there was only a modest amount of immunological reactivity detected to these antigenic foods in terms of fecal IgA production.
It was a bit of a shock to see that only meat is in the 0 column, not what she wanted to see. I have to say, I am surprised that tuna was not in the 0 column since she has not eaten tuna in years. We were also shocked that rice and white potato are in the 1+ column. I am glad they are not in the 2+ or 3+ column and that nothing shows up in the 3+ column and only oats (that she doesn't eat anyway) in the 2+ column.
My biggest question right now is: what should she eat??? She is okay with eating cod every day, she is not okay with eating meat. Is she allowed to eat rice (she has always been a very big rice eater and has a rice cooker at school)? And potatoes? So far, she has rice or potatoes with each meal. Is that still okay? Or should she leave them away? But what would she eat? She definitely does not want to eat fish more than twice a day. I am not sure if veggies are good right now with the fiber. So what does that leave?
Even though I have been tinkering with my own diet successfully for the past three years, I am at a loss as to what I should recommend to her.
When she spent again half the night in the bathroom early this week I decided that enough is enough and she should go see my gastroenterologist (especially since my daughter and I are both quite worried about her return to college in two weeks). She got in with the PA since he had a cancellation. He seemed very nice, was interested in the Enterolab results, did not dismiss them at all. He ordered an ultrasound of the gallbladder, an upper endoscopy and a colonoscopy to either confirm or rule out microscopic colitis or see if she has something else. He said that her having diarrhea at night pretty much rules out IBS.
She has complained about acid reflux this week for the very first time. I am worried that they might put her on a PPI.
I have to say, I am relieved that she will have the testing done this week, prior to her return to school. My gastroenterologist will do the colonoscopy and upper endoscopy. I am glad about that because he is very experienced, thorough and detail-oriented. Initially, when I was sick, he thought about MC before I even had all the symptoms and made sure to take plenty of biopsies.
My daughter has been emailing with the food service at her school and they are really super nice. They are excellent about labeling all the foods they offer whether they contain gluten, eggs, dairy, soy, are vegetarian or vegan (even at an outdoor event for parents I noticed that). They are super careful about cross contamination, too. They already promised my daughter that they will cook for her whatever she needs, if it's potatoes, rice, and cod, that's what they will cook. If she needs to adjust her diet, they will cook for her whatever she needs at the time, which is very nice. At the same time it is definitely harder at school than here at home. And even here I do not know what to tell her.
What would you recommend that she eat until she gets the results from the colonoscopy/biopsies? Should she eat rice and potatoes, and if yes, how often? She thinks that she tolerates potatoes better than rice. But I am afraid if she eats potatoes with every meal her potato intolerance might get worse. Sometimes, she doesn't want to eat because she is afraid it's going to make things worse. Obviously, that is not an option either.
Love, Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
- Bhante Gunaratana
Hi Patricia,
What a dilemma! This is a tough situation because she doesn't want to eat the only foods (meats) that she didn't react to on the test, but for that matter, we don't know if the reason she didn't react to them is because she hasn't eaten them in years. Maybe she could try some other type of fish. I wonder how she would do with fresh water fish? Some species might be OK. And if she doesn't otherwise have any allergies to shellfish, she should be able to tolerate shellfish such as shrimp, prawn, clams, oysters, etc. Maybe she could use cauliflower as a substitute for potatoes on alternate days in order to provide some rotation in her diet. Maybe someone else will have some more ideas.
Love,
Tex
What a dilemma! This is a tough situation because she doesn't want to eat the only foods (meats) that she didn't react to on the test, but for that matter, we don't know if the reason she didn't react to them is because she hasn't eaten them in years. Maybe she could try some other type of fish. I wonder how she would do with fresh water fish? Some species might be OK. And if she doesn't otherwise have any allergies to shellfish, she should be able to tolerate shellfish such as shrimp, prawn, clams, oysters, etc. Maybe she could use cauliflower as a substitute for potatoes on alternate days in order to provide some rotation in her diet. Maybe someone else will have some more ideas.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Patricia,
Both my daughter & granddaughter react to gluten...my daughter was diagnosed with Ulcerative Colitis 5 years ago and cleared that up with a gluten free & dairy free diet...basically Paleo or Whole 30 approach.
Her daughter had sores all over her body from gluten....suspect it is Dermatitis Herpetiformis....she is now a sophomore in college.
She was GF for many years then rebelled & said she didn't care what her skin did, she wanted to be like the other kids & eat whatever she wanted. Sigh...end of discussion. Her symptoms increased & soon she developed stomachs aches and increasing bouts of diarrhea. She became obese...parents going through terrible divorce....stress on everybody.
But her first year at college included a turnaround and she has changed her eating & is losing weight.
This genetic factor is so problematic....I read someone's comment that the trouble with the gene pool is that there is no life guard! So true....
Hoping for good news for your daughter...
Sunny
Her daughter had sores all over her body from gluten....suspect it is Dermatitis Herpetiformis....she is now a sophomore in college.
She was GF for many years then rebelled & said she didn't care what her skin did, she wanted to be like the other kids & eat whatever she wanted. Sigh...end of discussion. Her symptoms increased & soon she developed stomachs aches and increasing bouts of diarrhea. She became obese...parents going through terrible divorce....stress on everybody.
But her first year at college included a turnaround and she has changed her eating & is losing weight.
This genetic factor is so problematic....I read someone's comment that the trouble with the gene pool is that there is no life guard! So true....
Hoping for good news for your daughter...
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Patricia,
So sorry to hear about your daughters' struggles. It is truly difficult to live with this disease. As a suggestion for what your daughter can eat, I was wondering about coconut. There is a wonderful recipe for Paleo Muffins on here; if you search for it, it will come up. They are very simple to make, and options of non-wheat flour to make them with are numerous. I used to make them in muffin tins and stock up on them in the freezer, as did many here. They are dense and delicious, and truly helped when I was at my worst.
Also, if she tolerates coconut well, she can drink the milk, eat a tablespoon of pure coconut oil, etc. There are many ways to work with it, including coconut flour. It looks like she reacts to some of the nuts (albeit at the lowest level), but perhaps there are others, such as hazelnut, that she can tolerate. Also there are seed butters available, such as sunflower, etc. When I was at my most sensitive, I used to make my own nut milk, and it helped a lot.
As far as potatoes or rice, may be she can switch it up, so one day, it's potatoes and one day it's rice. Just some ideas.
Love,
Kari
So sorry to hear about your daughters' struggles. It is truly difficult to live with this disease. As a suggestion for what your daughter can eat, I was wondering about coconut. There is a wonderful recipe for Paleo Muffins on here; if you search for it, it will come up. They are very simple to make, and options of non-wheat flour to make them with are numerous. I used to make them in muffin tins and stock up on them in the freezer, as did many here. They are dense and delicious, and truly helped when I was at my worst.
Also, if she tolerates coconut well, she can drink the milk, eat a tablespoon of pure coconut oil, etc. There are many ways to work with it, including coconut flour. It looks like she reacts to some of the nuts (albeit at the lowest level), but perhaps there are others, such as hazelnut, that she can tolerate. Also there are seed butters available, such as sunflower, etc. When I was at my most sensitive, I used to make my own nut milk, and it helped a lot.
As far as potatoes or rice, may be she can switch it up, so one day, it's potatoes and one day it's rice. Just some ideas.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Thank you SO MUCH, Tex, Sunny, and Kari! It is so wonderful to have such a supportive potty people family and means the world to me
My daughter tried cauliflower yesterday and seemed to be fine with it. Yay!!! I started looking at the paleo muffins, the recipe seems to be really forgiving as so many different options are listed! I will make some for her and see how she does. She started using coconut oil for preparing her fish and potatoes and she seems to tolerate it well.
And yes, the genetic factor is definitely a problem. I feel bad that all three daughters have gotten the gene for gastrointestinal issues. I do wonder why we all started developing problems within the same year. It is very odd for sure. I am grateful, though, that I had a bit of a head start and was able to learn a lot before they started having issues.
Kari: I love your quote by Dr. Bernstein. I think of it so often! For many years, whenever we would return to Switzerland to visit my family and my husband's family, going to a bakery would be the highlight for all of us. Eating the freshly baked bread, the pastries, and cookies was something we would all look forward to. My first trip back to Switzerland after having been diagnosed was hard, especially walking past the bakery shops, even the train stations with their freshly baked pretzel breads and croissants. And it was exactly the same way when my daughters went back for the first time. My youngest one cried when we walked past so many cafes and restaurants last summer where people were sitting on the sidewalks, eating breaded schnitzels, the Italian restaurants with the wood-fired pizza and the steaming plates of pasta, even our favorite ice cream place with the freshly baked cones. All I could think about was your quote! And how true it is!!
Love, Patricia
My daughter tried cauliflower yesterday and seemed to be fine with it. Yay!!! I started looking at the paleo muffins, the recipe seems to be really forgiving as so many different options are listed! I will make some for her and see how she does. She started using coconut oil for preparing her fish and potatoes and she seems to tolerate it well.
And yes, the genetic factor is definitely a problem. I feel bad that all three daughters have gotten the gene for gastrointestinal issues. I do wonder why we all started developing problems within the same year. It is very odd for sure. I am grateful, though, that I had a bit of a head start and was able to learn a lot before they started having issues.
Kari: I love your quote by Dr. Bernstein. I think of it so often! For many years, whenever we would return to Switzerland to visit my family and my husband's family, going to a bakery would be the highlight for all of us. Eating the freshly baked bread, the pastries, and cookies was something we would all look forward to. My first trip back to Switzerland after having been diagnosed was hard, especially walking past the bakery shops, even the train stations with their freshly baked pretzel breads and croissants. And it was exactly the same way when my daughters went back for the first time. My youngest one cried when we walked past so many cafes and restaurants last summer where people were sitting on the sidewalks, eating breaded schnitzels, the Italian restaurants with the wood-fired pizza and the steaming plates of pasta, even our favorite ice cream place with the freshly baked cones. All I could think about was your quote! And how true it is!!
Love, Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
- Bhante Gunaratana