Very Discouraged

[trents]

I was diagnosed with celiac disease 5 years ago with blood antibiodes and biopsy positive. I have been very conscientious about gluten-free living. I am aware of all the places gluten can be hidden in sauces, medications, seasonings, oral hygiene products, food ingredient label nomenclature, etc. and have been very careful. Recently I had an endoscopy done because of GERD and while he was in their the gastro dock (same one who dx me 5 years ago) took a biopsy of my small intestine. Had the follow-up visit today. There are still a lot flattened villi and signs of active inflammation. I was in disbelief. This doc knows me personally and seemed stumped, almost embarrassed about not knowing anything to say to help me. He lamely suggested I get a consult from a dietitian about gluten-free eating. Well, like many of you by now I could probably give most dietitians some pointers. I left the doc's office totally discouraged and more than a little worried about my health. The doc also said it would be good if I could go to Europe or the East Coast "where all the experts are". But t hat isn't practical or affordable. He did mention that there are some other, rare medical conditions that can cause villi flattening. He is ordering some blood work to test for gastrin levels (a marker for one of the other possible medical conditions he mentioned) and gliaddin antibodies. I will be interested to get the results back from the gliaddin test as the one I had done a few months after the original dx was within normal range. I just don't know what to do next or where to go.

[dilettantesteph]

It is possible that you are one of us super sensitive celiacs and react to very small amounts of gluten. According to my GI some celiacs will get a gluten reaction from as small an amount as 0.5 mg. of gluten. That means that a lot of gluten free foods are off limits. There are a lot of posts in here about that sort of thing. Some wines have problems, some gluten free beers, some gluten free grains. Anything processed in a facility that also processes gluten containing ingredients is off limits. We can't eat out, or can only do it in a very limited way. My son and I both react to foods that have less than 5 ppm gluten. The limit for gluten free foods now is 20 ppm.

You just need to be doing some more learning about this diet. On the positive side, hopefully your GERD will go away when you get it figured out. My son's did.

My blessing and curse is that I am very symptomatic so that I can tell when I accidentally ingest gluten. We go to crazy extents to avoid gluten, but it works.

[happygirl]

Did he discuss refractory Celiac with you?

You may want to see a Celiac specialist who has seen cases like yours. Open Original Shared Link

[ang1e0251]

In my case, GERD is a sign to me that something's not right. Could you jot down your diet for awhile along with the symtoms? Just in case you're getting some sneaky gluten?

[mm&j]

God Bless you, I feel your discouragement. It is probably true that you are super sensitive to even the most minute amounts of gluten or perhaps have refractory sprue or unresponsive Celiac. There are forms of medication that people are put on to help with these conditions and promote healing. I think they start with prednisone, but I am not sure. I am just writing without researching , but I will look up a few things and get back to you. In the meantime, ask your Dr. friend for a recommendation of a specialist. I think that it is crazt to think that Drs. only know about this in Europe or the East coast. You definitely need someone more knoledgeable than him (and not a nutritionalist) I will write back if I can think or find out anything more to help. I am 52 and was diagnosed at 50 years old...probably have had Celiac for 20-30 years. If that is the case with you then it can take a long time to recover...so please don't give up hope.

Susie (mm&j)

[mm&j]

By the way, what does GERD stand for?

I am assuming Gastro-something...

I had absolutely no Gastro symptoms by the time I was diagnosed. My intestines were as smooth as glass by then.

mm&j

[mushroom]

By the way, what does GERD stand for?

I am assuming Gastro-something...

I had absolutely no Gastro symptoms by the time I was diagnosed. My intestines were as smooth as glass by then.

mm&j

Gastro Esophagal Reflux Disease

[trents]

Thanks for all of your encouragement. It really means a lot to me. A few months after being dx 5 years ago and working to be gluten free this doc ordered repeat antibody tests and they were in the safe range. Also, my liver enzymes (which had been elevated for 7-8 yrs.) were back into normal range and have been ever sense. So there was evidence that I was succeeding in my efforts to go gluten-free. That's why these resent biopsy results were such an emotional setback for me.

I should also mention that I am largely an asymptomatic celiac. The problem I was seeking answers for originally was not GI distress but the elevated liver enzymes. I give this doc crediit for knowing enough to realize that elevated liver enzymes can be caused by gluten intolerance. About the only GI symptom I was experiencing at the time was a lot of flatus and that is now history (ask my wife!).

Thanks for the suggestions about refractory sprue and unresponsive celiac. I need to do some research on these but my understanding was that refractory sprue was connected to remission of the disease followed by renewed onset when people begin to resume gluten consumption. There is also something called autoimmune villi flattening that is not celiac related.

Predisone therapy crossed my mind but there are so many side effects and risks with that. I have osteopenia so it might be contra indicated.

Does anyone have connections to any of the celiac gurus or "experts"?

And about the GERD, I had discontinued my protonix threapy for several months because I was afraid it was interfering with calcium absorption and so the GERD must have flared up on me.

[Tallforagirl]

trents, refractory sprue is when the villi do not heal despite adherence to a strict gluten-free diet. I don't believe that symptoms or lack of directly co-relate to level of villi damage.

When you mentioned the difficulty of getting an expert consultation, I remembered something I read on the main Celiac.com site in an article about celiac genetics by Dr Scott Lewey:

"If you are still confused by your test results or want more a personalized review of your results, symptoms or diagnostic tests I recommend that you see a physician who is an expert in celiac disease and understands these tests. I also offer on-line consultation for a reasonable fee through a secure consultation site, www.medem.com. You simply register (registration is free) for secure on-line communication and request a consultation. The consultation fee is $50, and some insurance companies will cover on-line communication."

Hope this helps.

[ravenwoodglass]

I was diagnosed with celiac disease 5 years ago with blood antibiodes and biopsy positive. I have been very conscientious about gluten-free living. I am aware of all the places gluten can be hidden in sauces, medications, seasonings, oral hygiene products, food ingredient label nomenclature, etc. and have been very careful.

Have you eliminated gluten from your nonfood items as well? Things like pet foods and litters, soaps, lotions, shampoos, conditioners, household remodeling stuff like drywall and wallpaper paste, craft items like glues and clays can all be sources of contamination. Does your wife use lipstick or other gluten makeup, do you consume gluten grain alcohols and vinegars or a lot of products that are at risk of heavy CC like Lays products? Do you take herbal supplements? There are some that are labeled gluten free but that have things like barley and wheat grass in them. Do you eat out a great deal? That can also be a source for CC. Also if any of your meds are generics you need to check them with the company that makes them whenever you refill as the binders can be changed in those at the will of the company without any notice or indication on the labeling.

It sounds like you have gluten sneaking in there somewhere. I hope you are able to figure it out quickly.

[Jestgar]

Maybe you could suggest to your doc that he attend the upcoming GIG conference in Seattle:

GIG

He might learn some new things, and he can probably write it off as a business expense (just guessing here).

[trents]

Thanks for those suggestions about the consultation services and the GIG conference. Those tips sound promising.

[happygirl]

https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

[4wildberries]

Have you eliminated gluten from your nonfood items as well? Things like pet foods and litters, soaps, lotions, shampoos, conditioners, household remodeling stuff like drywall and wallpaper paste, craft items like glues and clays can all be sources of contamination. Does your wife use lipstick or other gluten makeup, do you consume gluten grain alcohols and vinegars or a lot of products that are at risk of heavy CC like Lays products? Do you take herbal supplements? There are some that are labeled gluten free but that have things like barley and wheat grass in them. Do you eat out a great deal? That can also be a source for CC. Also if any of your meds are generics you need to check them with the company that makes them whenever you refill as the binders can be changed in those at the will of the company without any notice or indication on the labeling.

It sounds like you have gluten sneaking in there somewhere. I hope you are able to figure it out quickly.

I totally agree with this type of sleuthing! We are in the SUPER-DUPER sensitive crowd----so al lot of those lovely gluten-free items are still off limits to us. One thing 4 years into this lifestyle we have found is that "Yes, it's gluten-free" is STILL not enough info for us to be safe eating or using an item. I have to go the extra lengths now to find out the sources of things like vinegar, glucose syrup, vitamins, vitamin E and alcohol. Even though there is no gluten left in highly processed items like this----whatever part of the wheat, barley or rye still there is totally toxic to us! I totally feel your pain!! And I hope you get things figured out so you can be healthy.

[Amber M]

I was diagnosed with celiac disease 5 years ago with blood antibiodes and biopsy positive. I have been very conscientious about gluten-free living. I am aware of all the places gluten can be hidden in sauces, medications, seasonings, oral hygiene products, food ingredient label nomenclature, etc. and have been very careful. Recently I had an endoscopy done because of GERD and while he was in their the gastro dock (same one who dx me 5 years ago) took a biopsy of my small intestine. Had the follow-up visit today. There are still a lot flattened villi and signs of active inflammation. I was in disbelief. This doc knows me personally and seemed stumped, almost embarrassed about not knowing anything to say to help me. He lamely suggested I get a consult from a dietitian about gluten-free eating. Well, like many of you by now I could probably give most dietitians some pointers. I left the doc's office totally discouraged and more than a little worried about my health. The doc also said it would be good if I could go to Europe or the East Coast "where all the experts are". But t hat isn't practical or affordable. He did mention that there are some other, rare medical conditions that can cause villi flattening. He is ordering some blood work to test for gastrin levels (a marker for one of the other possible medical conditions he mentioned) and gliaddin antibodies. I will be interested to get the results back from the gliaddin test as the one I had done a few months after the original dx was within normal range. I just don't know what to do next or where to go.

I haven't been online for a bit, so forgive me if I'm behind here. Just wanted to put my two cents worth in. I recently listened to a doctor of research's lecture online about all of this "cross-reactivity" stuff. The body mistakes the "similar" proteins in other foods for gluten after it is used to reacting to the gluten. Over the last several months, being sure I had not ingested gluten, was still having reactions. I began to give up more and more in the diet. I now eat no grains other than rice and pretty much all whole foods. The only prepared food I eat is "Pamala's Pancake Mix" and one brand of rice crackers. Everything else is whole food. It might do you good to look into the cross-reactivity issue.

Some of the things the doctor mentioned surprised me, yet I had already realized I had digestive problems with some of them. Here's a few of the cross-reactive foods: Chocolate, Coffee, Corn, Dairy, Soy, Brewers Yeast, Sesame (I was using the oil!) He also talked about how many common viruses (cold, herpes, etc) can trigger celiac. I wish I could remember the site, but all I can tell you is I googled "cross-reactivity food" and ended up there.

I haven't given up dairy yet, because my test came back okay on that, but I have gotten better since giving up coffee, corn and sesame oil. I had already given up chocolate. I wonder if yor body is reacting because of the "similar" proteins!?

Also, I take digestive enzymes (not the fruit ones) for Gerd and now have no Gerd at all!! Gerd was always my sign I ate something I shouldn't have! Just know that it isn't always gluten causing the reactions. I learned a lot researching the cross reactivity issue. Hope this helps. Good luck.

[trents]

https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

Thanks for this resource, happygirl.

[trents]

https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

Yeah, I googled "refractory sprue" and found this article myself early this morning. Seems to be saying that refractory sprue is a condition that has a foundation in gluten intolerance/celiac disease but then takes on a life of its own apart from the presence or absence of gluten in the diet. It's an excellent article to give to m GI doc. If nothing else, maybe he has connections with "experts" and can open some doors for me.