Food Testing

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Hi Carol,
The piece of the puzzle I am missing is a Health Practitioner. The gastro and PCP doctor's just aren't helping me. I have been trying to find a HP, but have been unsuccessful. My sister-in-law lives in NY and is one, but she is too far away to be of much help.

I agree about the Facebook groups... it's a free-for-all and nothing else. Time to leave them all behind. I am learning more here than I could have imagined! BTW I made your turkey sausage and it's fabulous!!! Thank you!

Have a great day!

Christine

[cmscalise]

Tex,

BIG mistake on eating more meat! I just got my test back from Enterolab and it's not good!

RESULTS:
Quantitative Microscopic Fecal Fat Score 1534 Units (Normal Range is less than 300 Units)

Fecal Anti-gliadin IgA 39 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 230 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 109 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 200 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 121 Units (Normal Range is less than 10 Units)

Food to which there was no significant immunological reactivity:None

Food to which there was some immunological reactivity (1+): None

Food to which there was moderate immunological reactivity (2+):
Oat
Rice
Beef
Pork
Tuna
Walnut
Cashew

Food to which there was significant and/or the most immunological reactivity (3+):
Corn
Chicken
Almond
White potato

Tex, I'm not sure if I should jump for joy with this knowledge, or sit in a corner and cry because I can't eat anything! I am very concerned with the fat malabsorption and the dairy I had no idea I was that intolerant to! Can you please tell me what all the above means? Should I stop eating ALL those foods? I am also not to eat soy, nightshades and most nuts. The nuts and seeds I can eat I should soak. It's also recommended that I order the pancreatic elastase test because of the fat malabsorption. I don't eat a lot of fat and now I'm scared to eat any at all! Also, is this typically a 'forever' for these foods? Ugh... How did I get like this? At least this explains why I can't seem to get my inflammation down.

For now, I think I will sit in the corner and cry while I try and put a meal plan together. Thanks for listening.


Christine

[tex]

You have some very high numbers. Usually, high numbers indicate that you have been reacting to those foods for a very long time.

Yes, totally avoid those foods. Traces of gluten are just as bad as eating a lot of it. Eat turkey, lamb, and wild-type meats (such as duck,goose, pheasant, quail, rabbit, venison, etc.) Avoid bison, they all have domestic cattle DNA these days. I doubt that you will learn anything from the pancreatic elastase test, because many of us have compromised pancreatic function when our MC is active, due to the systemic inflammation. It may not be forever on all those foods. When the inflammation really gets high, we can react to almost everything. It tends to settle down a bit as we heal.

Consider things like sweet potatoes, cauliflower, etc., if you're looking for carb substitutes.

Tex

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Tex,
What you said previously confirms the need to know your food triggers. And you're correct. I have been eating these things for a long time and would have continued to eat them if I listened to my HP. Thank you to you and Carol for encouraging me to get the test done. I hopefully will be able to start healing now that I know what to stay away from.

[carolm]

Hi Christine- remember knowledge is power and now you are better armed (but I can see where you would be stunned by these results). In my experience, my first Enterolab results are not my ‘forever’ plan. At the time I showed reaction to pork and eggs. After remission I was able to add them back in and very recently I had my Enterolab tests run again and I showed no reactivity to pork or eggs. So things can change. Your focus now is getting that inflammation down and getting to remission. It’s overwhelming in the beginning but you’ll settle into a new routine and be less stressed.

I hope this helps,
Carol

[cmscalise]

Thank you Carol!

Then there is hope! YAY! I was really stunned to say the least. All I could think of was how do I live like this??? I can't eat anything! You're right about focusing on getting the inflammation down. I'm taking the Budesonide for that and I hope it helps along with the diet. I can't help but wonder what my GI doctor is thinking by telling me diet doesn't matter, just resume a normal diet... Huh? I would also like to hear his explanation about the high fat score I have as well, but right now I can't tell him about the testing I had done as he instructed me to 'resume a normal diet.' That will need to come after the next visit when I tell him a normal diet doesn't change it for the better it only makes it worse! Is it common for us with MC to not get very far with our GI doctors? I feel like I'm somehow wrong for taking my health into my own hands. It shouldn't be that way, but it is.

Thank you again!

[tex]

Christine,

I believe many of us feel that way. We need the services of a GI doc to get a diagnosis and a prescription, but we basically treat ourselves.

Personally, I had no help from my GI Doc. My GP is much more understanding, and we get along fine, because he has a daughter who is a celiac and a son with Crohn's disease. They're both in remission without any drugs. He once told me that the whole family eats according to the diet recommendations in my book. What a difference personal experience dealing with an IBD or two in the family can make on a doctor's attitude.

Tex

[carolm]

Christine, it’s the diet that heals. The Budesonide will help you function in the short term, but it’s the diet changes that will facilitate healing for the long haul.

I had an awesome GI nurse practitioner I worked with when I was first diagnosed. She supported my diet changes, was happy for my progress and poured over my food and poop log with me, while we tried to problem solve some issues. Even she would not have recommended going gluten, soy and dairy free because that’s not the current view of GI medicine. But- I know she knew these changes made a difference.

Then I moved to Kansas City, saw a new GI doc for upper GI issues who told me I should try eating gluten and soy again. Seriously?? And the worst part- the guy is also a professor at a nearby medical school. I won’t be going back to him.

Contrast that with my functional med doc with an integrative medicine group who was happily surprised that I had Enterolab results and had already gone gluten, soy and dairy free. “You’ve already done the hard work” he said, with a smile. We’ve been addressing methylation issues and vitamin deficiencies since then and I am definitely better for it.

Ultimately we are responsible for our own health, especially when it come to autoimmune diseases. For a long time I’ve realized that when it comes to my LC, there is nothing conventional Western medicine has to offer me. The excellent advice from this site, acupuncture and functional medicine have been instrumental in helping me to be the best I can.

Carol

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Tex & Carol,

I cannot for the life of me understand the resistance we get from these medical professionals. I am so discouraged by the treatment I get and it's obvious that this is the case for you and mostly everyone on here. I so appreciate all the help you both have been given me. I would honestly be lost right now. I'm trying to find a local Health Practitioner that can help me, but there is no one local except one and he won't treat me unless my spouse comes with me for my appointments. That can't happen, I don't want it to happen and so I'm on my own with just my inadequate GI doc.

Enterolabs contacted me yesterday and voiced concern over my fat absorption levels and wanted to test me further. They really think it needs to be addressed and looked at more closely. The numbers are extremely high. If it is pancreatic insufficiency which it just may be, I may need digestive enzymes they said. Also, has anyone ever used the medical doctor at Enterolab - Dr. Fine for treatment? Carol you spoke of methylation issues and I'm seeing it may be a common problem with MC, can this be something I can have tested as well? How would I do that? Can a PCP do that test?

Right now I am staying to the food allowances and using an autoimmune diet protocol tweaking my foods with it. I really don't see where the Budesonide is doing anything for me. I don't have 'D' that has never really been my problem accept for about a month back in July. Since then, I have had fairly normal BM's and the medication hasn't touched the burning in my stomach or the horrid taste that comes up. So I don't know why I was even put on it.

Again, thank you both

[tex]

Christine,

Most of us don't bother with the pancreatic issues because they're very common with MC and they usually resolve as the inflammation that causes the MC declines. That said, most of us don't have a fecal fat score that high. A few members take pancreatic enzymes and feel that they may help. But as long as MC is active, our digestion is going to be in serious disarray anyway, so we're hardly justified in trying to treat each little element of the entire complex process. It's usually much better to just control the MC and everything else will automatically resolve itself. It may help for you to take certain enzyme supplements, or it may not. You would have to determine that by trial and error. In my case, my first (and only) digestive enzyme pill made me sick as a dog for 4 or 5 days. We're all different though, in how meds or supplements affect us.

As for Dr Fine's consultations: He has MC himself, which he controls by diet, but he resolved his MC over 20 years ago and he seems to have forgotten some of what we have to go through in order to reach remission. Over the last few years or so, he has become somewhat of a health fanatic (in my opinion) going way overboard trying to sell various products that he has developed to promote health. They might be fine for healthy people, but we have found that for the vast majority of us, the less we put in our mouth while we are trying to recover, the more likely we are to recover, and the faster we will recover. IOW, less is more when trying to treat MC by diet changes. The more supplements we take, the more likely that one of them will prevent us from reaching remission.

IMO, the best way to find out whether or not you have gene mutations that cause methylation issues is to order a test kit from 23andme and then use one of the many analyses available online to process the data and give you a detailed listing of your genetics and possible issues. I don't know if your doctor would be willing to order that test (he or she should be) but you can certainly order the test yourself.

Remember, all this is just my opinion.

Tex

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Thank you Tex. I value your opinions highly and always take them into consideration. Like you say about my fat score that not many have a score that high and it just makes me wonder if I have something additional going on as well as the MC. I had a stool test done months prior to getting my C.C. diagnosis and my score was high at that time as well. As for the other issue, I'll see if my PCP will order a test for me. If not, I'll go solo and do it myself!

I appreciate the heads up on Dr. Fine. I'm sure he has good intentions, but being that he's no longer where we are, he may have lost his way a bit.

Thanks again!

[tex]

Christine,

I forgot to mention that Dr Fine is a vegetarian. Most of us cannot follow that lifestyle because we react to soy and most legumes. Extra protein is a requirement for healing. For most of us, that means we have to include a lot of meat in the diet.

Tex

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Oh...Tex i could never be a vegetarian. Not even if I wasn't sick, lol. I'm a true carnivore! But... to each his own I say!

[rcchild@gpcom.net]

Christine,
You will get better! And when you do it will feel so amazing. So glad you found this group and can start your healing process.
I developed MC a little over 3 years ago - my only symptom was watery D, but it was awful. I managed until the beginning of 2019 and then it was just out of control. Started a really restricted diet - I felt I could eat meat and rice so that helped a little. Tried low fodmap, but at that time it did not help at all - think I just needed much more healing before I ate any fiber. Then tried SCD, but there are several allowed foods on that diet that don't work for us. In May I finally gave in, went to a gastro, and was diagnosed with MC. I'm so grateful to have found this group. I did go ahead with the Enterolab test and felt that helped me a lot. I just committed to avoiding my intolerances and followed the diet recommended by this group. For me that was beef, pork, salmon, banana, rice, some rice chex and rice cakes, a little potato on occasion. I could not find any other vegetable or fruit that would work. I did not give up coffee and only gave up dry red wine for a few weeks (that may have delayed healing some, but geez I had given up everything else. It was allowed on SCD and did not seem to make me worse so I took a chance.) By the way my fecal fat malabsorption was 1134 - right up there with yours! In my case I think it was because on SCD lactose free yogurt was one of the few foods I could eat and I ate a lot of it. But it turns out I'm casein intolerant, as many of us are. I really feel that my fat malabsorption is probably much better now - just going by the way the BMs fall to the bottom of the toilet bowl instead of floating (sorry TMI).
It's been 13 months since I started the really restricted diet. There were small improvements every once in awhile and that kept me going. Last fall I kind of went into a flare for some reason and I felt like it would never get better. Finally in the last few weeks I am much improved. All the work I put into this has been worth it.
So keep up the good work and best of luck.
Carol