Hi Patricia....
I've been following along, and I feel just as bad for your daughters as you do....I think my daughter will have a coming to terms about gluten free real soon too and she turned 24 and has two children and I often wonder if it has been gluten that has caused her poor acne over her puberty years.
Anyway here is a bread that is Vegan and Gluten, Soy Free https://us.bfreefoods.com/ I know we are to stay away from to many ingredients but maybe your daughters might be able to tolerate this one and it tastes good, doesn't have to be toasted, and they could use SOY Free Earthbalance spread. I can only seem to find the BeFree at Safeway but maybe it is in a store near you :-) The Earthbalance I can find at Walmart...
We have a Vegetarian store that caters to those that don't eat meat called Andy's Market and it has a product called Veganaise Soy free made with pea protein and it tastes just like Mayo and I mix it with a little ketchup and make my own dipping sauce, or I use it to flavor my Yellow steamed potato etc....it has had many uses for me even in its plain form. I don't worry about the amount of 'pea' protein and it being associated with the soy family right now...I just want some foods that can get along with me right now.
Enterolab results of my girls
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Erica, I know what you mean about having your kids come to terms with gluten. My husband just tested at Enterolab and he is also positive for gluten. He figured out a couple of years ago that it was bothering him. I don't think my kids have a chance at avoiding issues with it and I won't be surprised if it happens earlier to them than to us. I, too, wondered if my grandson's acne might be related to gluten.
Erica - your 2 suggestions (soy free Earth Balance and soy free Vegenaise) have been staples for me for a few years, so I totally agree with your recommendation.
Patricia - a suggestion for an easy snack is Edward & Sons GF Crackers (I like the Sesame ones). When I feel "empty", I have a couple of them with a spread of Earth Balance. The fat in the EB satisfies.
I loved your description of Switzerland's Bakeries/Cafes:). I grew up in Europe (Norway) so I can relate to every word. Also, my mother was an incredible baker. I vividly remember the strong scent of baking as I was nearing our house, coming home from school in the afternoons. Just the thought makes me salivate
.
Unfortunately, my double celiac genes were passed on to my only son and 3 grandchildren. I had all of them tested at Enterolab after I got my own results, and sure enough they all came back highly sensitive to gluten. Because they had witnessed how much I suffered, they were willing to go gluten free, and have been for several years now. The adjustment was tough, but by now it's second nature.
Best of luck to your daughters and yourself - it's a rough road to travel
Love,
Kari
Patricia - a suggestion for an easy snack is Edward & Sons GF Crackers (I like the Sesame ones). When I feel "empty", I have a couple of them with a spread of Earth Balance. The fat in the EB satisfies.
I loved your description of Switzerland's Bakeries/Cafes:). I grew up in Europe (Norway) so I can relate to every word. Also, my mother was an incredible baker. I vividly remember the strong scent of baking as I was nearing our house, coming home from school in the afternoons. Just the thought makes me salivate
. Unfortunately, my double celiac genes were passed on to my only son and 3 grandchildren. I had all of them tested at Enterolab after I got my own results, and sure enough they all came back highly sensitive to gluten. Because they had witnessed how much I suffered, they were willing to go gluten free, and have been for several years now. The adjustment was tough, but by now it's second nature.
Best of luck to your daughters and yourself - it's a rough road to travel
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 to everyone for all the suggestions!
Kari: I just ordered the Edwards & Sons crackers and can't wait to try them out. I like the fact that there are only two or three ingredients in them. I ordered two different kinds.
I think it's very impressive that your son and grandchildren went gluten free. Good for them!
My daughter had the upper endoscopy and colonoscopy on Friday. My gastroenterologist came to talk to me while she was still asleep. He said everything looked normal from what he could see but he took lots of biopsies. He took some in the esophagus to check for eosinophilic esophagitis, some from the duodenum, and of course some from the colon to either confirm or rule out microscopic colitis. He said he hopes that the biopsies will provide some useful information.
Erica: here is the link to the paleo muffin recipe (9 pages of different variations of it!):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=16412
Love, Patricia
Kari: I just ordered the Edwards & Sons crackers and can't wait to try them out. I like the fact that there are only two or three ingredients in them. I ordered two different kinds.
I think it's very impressive that your son and grandchildren went gluten free. Good for them!
My daughter had the upper endoscopy and colonoscopy on Friday. My gastroenterologist came to talk to me while she was still asleep. He said everything looked normal from what he could see but he took lots of biopsies. He took some in the esophagus to check for eosinophilic esophagitis, some from the duodenum, and of course some from the colon to either confirm or rule out microscopic colitis. He said he hopes that the biopsies will provide some useful information.
Erica: here is the link to the paleo muffin recipe (9 pages of different variations of it!):
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=16412
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
I am so very sorry about your daughter's results. I'm sure you were so disappointed as were they. It's good that you have this info while they are young because that should give them a heads up quite early instead of suffering for years with D, etc. and not being able to get a diagnosis.
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Patricia,
Hope you enjoy the crackers.
The reason my son fully embraced leaving gluten behind (besides having watched my suffering) is that he started to develop various autoimmune issues, such as thyroid, eczema, etc. They all cleared up when he dropped it. It was logical and fairly easy to transition the kids over to gluten free as well.
Fortunately, all 3 kids are very diligent about staying gluten free when away from home. Since the public awareness about gluten allergy has been raised substantially over the last several years, they don't feel that there is anything "weird" about it.
Love,
Kari
Hope you enjoy the crackers.
The reason my son fully embraced leaving gluten behind (besides having watched my suffering) is that he started to develop various autoimmune issues, such as thyroid, eczema, etc. They all cleared up when he dropped it. It was logical and fairly easy to transition the kids over to gluten free as well.
Fortunately, all 3 kids are very diligent about staying gluten free when away from home. Since the public awareness about gluten allergy has been raised substantially over the last several years, they don't feel that there is anything "weird" about it.
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
Patricia,
I take Gluten Ease when I travel. So far so good..............it's supposed to help break down gluten and casein and I take it before I eat whenever we travel and I have to eat out. I don't use it on a regular basis, but it does work upon occasion (at least for me).
I take Gluten Ease when I travel. So far so good..............it's supposed to help break down gluten and casein and I take it before I eat whenever we travel and I have to eat out. I don't use it on a regular basis, but it does work upon occasion (at least for me).
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
I dropped off my oldest daughter back at school in Maine this week. While I was on my way home, she called me to say that the gastroenterologist's office called her with the results of the biopsies. Surprisingly, the biopsies from the colon were normal. My daughter and I really expected them to show MC. The biopsies from the duodenum were normal as well, they said no evidence of celiac's disease. However, she has been consistently gluten free for the past two years, so any evidence of damage to the villi would have really surprised me. The biopsies from the esophagus showed some inflammation that they thought was bacterial and they prescribed antibiotics for her. Unfortunately, I only heard everything second hand from my daughter and was not able to ask the nurse any questions.
My daughter has been on the elimination diet for 6 weeks. Before and since the colonoscopy she has had some days or nights of diarrhea. The PA had said that having diarrhea at night pretty much ruled out IBS. She has had less diarrhea since being on the elimination diet. She definitely feels a lot better, no nausea, rarely any bloating or abdominal pains. She still has the gurgling sounds every so often. She lost about 20 pounds in the past two months. I think part of it is due to diarrhea, the other part due to a very limited diet and sometimes a reduced appetite because she is just not very excited about eating fish after having been vegan. She had blood tests done at the beginning of the summer and they were normal.
The fact that I have lymphocytic colitis, that all three daughters have gastrointestinal problems, that she has the same symptoms I had initially (diarrhea, gurgling sounds, loss of weight), and that she reacted to different foods in the Enterolab test really makes me think that she has MC, too, and that they just did not get a biopsy from the inflamed part of the colon. Also, is it possible that the inflammation in the esophagus biopsies is not from a bacterial infection but due to MC? What do you guys think? I told her to continue with the elimination diet at school since it seems to work. She is taking magnesium and vitamin D. Anything else you would recommend that she do?
Kari: I really enjoy the crackers, both the plain rice ones and the sesame seed ones. I found that putting a little coconut oil (refined or unrefined, while it's cool and firm) on the crackers was delicious! I don't think it needs anything else and is very satisfying. Of course, I could start experimenting with spreads made from pureed veggies, or pureed olives, sort of like a tapenade. That might come next. I definitely have to order more of them! It would also be nice to bring them to someone's house when I am invited. I am always looking for good foods to bring that everyone enjoys. Last night my husband and I were invited to a party and we brought bacon-wrapped scallops that everyone loved and they were safe for me to eat.
Love, Patricia
My daughter has been on the elimination diet for 6 weeks. Before and since the colonoscopy she has had some days or nights of diarrhea. The PA had said that having diarrhea at night pretty much ruled out IBS. She has had less diarrhea since being on the elimination diet. She definitely feels a lot better, no nausea, rarely any bloating or abdominal pains. She still has the gurgling sounds every so often. She lost about 20 pounds in the past two months. I think part of it is due to diarrhea, the other part due to a very limited diet and sometimes a reduced appetite because she is just not very excited about eating fish after having been vegan. She had blood tests done at the beginning of the summer and they were normal.
The fact that I have lymphocytic colitis, that all three daughters have gastrointestinal problems, that she has the same symptoms I had initially (diarrhea, gurgling sounds, loss of weight), and that she reacted to different foods in the Enterolab test really makes me think that she has MC, too, and that they just did not get a biopsy from the inflamed part of the colon. Also, is it possible that the inflammation in the esophagus biopsies is not from a bacterial infection but due to MC? What do you guys think? I told her to continue with the elimination diet at school since it seems to work. She is taking magnesium and vitamin D. Anything else you would recommend that she do?
Kari: I really enjoy the crackers, both the plain rice ones and the sesame seed ones. I found that putting a little coconut oil (refined or unrefined, while it's cool and firm) on the crackers was delicious! I don't think it needs anything else and is very satisfying. Of course, I could start experimenting with spreads made from pureed veggies, or pureed olives, sort of like a tapenade. That might come next. I definitely have to order more of them! It would also be nice to bring them to someone's house when I am invited. I am always looking for good foods to bring that everyone enjoys. Last night my husband and I were invited to a party and we brought bacon-wrapped scallops that everyone loved and they were safe for me to eat.
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, another yummy is bacon wrapped asparagus too 
We've done that camping.. it's a big hit.
I also feel your daughter has a type of MC..and being proactive that it truly is it and eating accordingly will help make her time at school a better experience as well as a life long change for the better regardless if a positive result was had from the biopsies. As you say they may just not have hit on the right area. Symptoms don't lie...
Hugs
We've done that camping.. it's a big hit. I also feel your daughter has a type of MC..and being proactive that it truly is it and eating accordingly will help make her time at school a better experience as well as a life long change for the better regardless if a positive result was had from the biopsies. As you say they may just not have hit on the right area. Symptoms don't lie...
Hugs
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Hi Patrticia,
I surely wouldn't be surprised if your hunch is right. There is a big gap between a normal lymphocyte count and a count high enough to qualify for a diagnosis of MC. That gap can include what's known as paucicellular LC, but probably not all pathologists are familiar with paucicellular LC. Even if they are, they are not likely to hand down a diagnosis of anything if the count doesn't qualify for LC. It would be good to know what her lymphocyte count on the respective biopsy samples actually was.
Love,
Tex
I surely wouldn't be surprised if your hunch is right. There is a big gap between a normal lymphocyte count and a count high enough to qualify for a diagnosis of MC. That gap can include what's known as paucicellular LC, but probably not all pathologists are familiar with paucicellular LC. Even if they are, they are not likely to hand down a diagnosis of anything if the count doesn't qualify for LC. It would be good to know what her lymphocyte count on the respective biopsy samples actually was.
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.
Thanks so much for all the info!
My daughter called the gastroenterologist's office and asked them to send the pathology report, which they did. Here is what we received:
Results:
Normal small bowel biopsy and colon biopsy actinomyces on the esophagus with no esophageal lesion
We will treat for 10 days with Augmentin
SPECIMEN A: small bowel biopsy:
- benign disoriented small intestinal mucosa
- negative for celiac sprue disease
SPECIMEN B: random esophagus
- benign squamous epithelium with actinomyces bacterial colonies
- negative for eosinophilic esophagitis (see comment)
Comment: mucin stain is negative for goblet cell metaplasia
PAS stain is negative for fungal element
SPECIMEN C: random colon
- benign edematous colonic mucosa
- negative for active, pseudomembranous, ischemic, and/or microscopic colitis
This is followed by a gross description with measurements of the different biopsies (they received one small bowel biopsy, multiple esophagus biopsies, and four colon biopsies).
Slides examined: 6 HE slides and 2 special stains
Unfortunately, the report does not include a lymphocyte count of the colon biopsies, which surprised me.
Should my daughter call the gastroenterologist and ask him to ask the pathologist for the lymphocyte count? As you said, Tex, they might not have looked for paucicellular lymphocytic colitis.
Also, what does "disoriented" small intestinal mucosa mean?
What prompts actinomyces bacterial colonies in the esophagus? I could only find information that it is very rare and that it sometimes occurs in people with a compromised immune system.
Why is the colonic mucosa edematous?
Should I be concerned about any of this?
Thanks so much!!!
Love, Patricia
My daughter called the gastroenterologist's office and asked them to send the pathology report, which they did. Here is what we received:
Results:
Normal small bowel biopsy and colon biopsy actinomyces on the esophagus with no esophageal lesion
We will treat for 10 days with Augmentin
SPECIMEN A: small bowel biopsy:
- benign disoriented small intestinal mucosa
- negative for celiac sprue disease
SPECIMEN B: random esophagus
- benign squamous epithelium with actinomyces bacterial colonies
- negative for eosinophilic esophagitis (see comment)
Comment: mucin stain is negative for goblet cell metaplasia
PAS stain is negative for fungal element
SPECIMEN C: random colon
- benign edematous colonic mucosa
- negative for active, pseudomembranous, ischemic, and/or microscopic colitis
This is followed by a gross description with measurements of the different biopsies (they received one small bowel biopsy, multiple esophagus biopsies, and four colon biopsies).
Slides examined: 6 HE slides and 2 special stains
Unfortunately, the report does not include a lymphocyte count of the colon biopsies, which surprised me.
Should my daughter call the gastroenterologist and ask him to ask the pathologist for the lymphocyte count? As you said, Tex, they might not have looked for paucicellular lymphocytic colitis.
Also, what does "disoriented" small intestinal mucosa mean?
What prompts actinomyces bacterial colonies in the esophagus? I could only find information that it is very rare and that it sometimes occurs in people with a compromised immune system.
Why is the colonic mucosa edematous?
Should I be concerned about any of this?
Thanks so much!!!
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,
Using the term "disoriented" in reference to the small intestinal mucosa has to be some sort of quaint, unique jargon shared by pathologists. There's no telling what it might mean in the real world. It probably refers to some random variation in the appearance that has no particular definition, like maybe the villi were pointing in all different directions instead of straight up.
Actinomyces bacterial colonies in the esophagus means that something has probably disrupted their original colony or colonies in the mouth and inspired them to migrate. It probably means nothing, as they are commonly found in the mouth, and the pathology report doesn't indicate an infection. An infection in the esophagus would be rare, but would be concerning.
I don't understand the comment that the colonic mucosa was edematous. Was it just slightly moister than usual, or was it wet enough to indicate secretory diarrhea? Secretory diarrhea would be a marker of MC.
And instead of stating "negative for active, pseudomembranous, ischemic, and/or microscopic colitis", it would be nice to see the data on which he based that decision. Such as the actual lymphocyte count or at the very least an indication of whether of not the count was elevated above the normal level. I think this was the GI docs interpretation of the pathology report, not the original pathology report. It appears to be a "dumbed down" version with the actual data removed, But maybe it's what this particular pathologist provides, to keep everyone from second-guessing his opinions.
Anyway, those are my thoughts.
Love,
Tex
Using the term "disoriented" in reference to the small intestinal mucosa has to be some sort of quaint, unique jargon shared by pathologists. There's no telling what it might mean in the real world. It probably refers to some random variation in the appearance that has no particular definition, like maybe the villi were pointing in all different directions instead of straight up.
Actinomyces bacterial colonies in the esophagus means that something has probably disrupted their original colony or colonies in the mouth and inspired them to migrate. It probably means nothing, as they are commonly found in the mouth, and the pathology report doesn't indicate an infection. An infection in the esophagus would be rare, but would be concerning.
I don't understand the comment that the colonic mucosa was edematous. Was it just slightly moister than usual, or was it wet enough to indicate secretory diarrhea? Secretory diarrhea would be a marker of MC.
And instead of stating "negative for active, pseudomembranous, ischemic, and/or microscopic colitis", it would be nice to see the data on which he based that decision. Such as the actual lymphocyte count or at the very least an indication of whether of not the count was elevated above the normal level. I think this was the GI docs interpretation of the pathology report, not the original pathology report. It appears to be a "dumbed down" version with the actual data removed, But maybe it's what this particular pathologist provides, to keep everyone from second-guessing his opinions.
Anyway, those are my thoughts.
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.
Thank you so much for sharing your thoughts, Tex. It has been three years since my diagnosis with MC and you have provided me countless times with invaluable advice and so much information. It truly means the world to me AND my family!!! And it is so comforting to know that there is such a knowledgeable MC family right here, always happy to help!
I will talk to my oldest daughter and see what she wants to do. She just started the antibiotic now since it had been called into the pharmacy here in Pennsylvania and she was already up in Maine. When my middle one (who attends the same school in Maine) flew up this weekend, she brought her the antibiotic. My oldest one has been complaining about discomfort in her throat down to the stomach once in a while since the upper endoscopy. Initially, right after the endoscopy, I thought it was because of the biopsies, that she could feel where they removed little pieces. But maybe the bacteria made that worse. Who knows. Hopefully the antibiotics will help.
She has been on the elimination diet for nearly 2 months now. She started it the day after her 20th birthday. Once in a while she complains about a weird bowel movement, but she has not had diarrhea in quite a while now, which I think is wonderful! She still has a stomachache once in a while after eating, but not regularly anymore. I think the diet has helped tremendously. I hope her weight is stabilizing, too. She lost 20 pounds in 2 months when she kept having diarrhea (exactly like me). At least now, she is absorbing again what she is eating
Thanks again!
Love,
Patricia
I will talk to my oldest daughter and see what she wants to do. She just started the antibiotic now since it had been called into the pharmacy here in Pennsylvania and she was already up in Maine. When my middle one (who attends the same school in Maine) flew up this weekend, she brought her the antibiotic. My oldest one has been complaining about discomfort in her throat down to the stomach once in a while since the upper endoscopy. Initially, right after the endoscopy, I thought it was because of the biopsies, that she could feel where they removed little pieces. But maybe the bacteria made that worse. Who knows. Hopefully the antibiotics will help.
She has been on the elimination diet for nearly 2 months now. She started it the day after her 20th birthday. Once in a while she complains about a weird bowel movement, but she has not had diarrhea in quite a while now, which I think is wonderful! She still has a stomachache once in a while after eating, but not regularly anymore. I think the diet has helped tremendously. I hope her weight is stabilizing, too. She lost 20 pounds in 2 months when she kept having diarrhea (exactly like me). At least now, she is absorbing again what she is eating
Thanks again!
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