Negative Biopsy, Trying gluten-free Anyway

[andreagrant]

I'm so glad I found this forum! I've been having digestive trouble for ages (IBS since ~1990 with chronic diarrhea, and bloating/gas) but about 2 years ago I apparently started using the phrase 'digestive chaos' a lot. My dad and grandpa have celiac disease, but since I haven't lost any weight I never considered that I might have it. I have also been fatigued for several years and have complained to several doctors who all immediately dismiss it as depression after seeing that my iron and vit B levels are normal. Anyhow I suddenly realized that seeing an oil slick in the toilet (along with stool that is almost unflushable--a real nightmare here in Switzerland where there is almost no water in the toilet--just acres of gleaming porcelain) is NOT normal IBS. I have also developed lactose intolerance in the past 6 (?) months. Actually I sat down and made a list of all my health complaints and I was horrified that it came out to almost 2 full pages. Not sure when the oily stool started--at least 2 or 3 years ago, but the little oil slicks appeared suddenly after having knee surgery last October.

I mentioned this to my doctor and he ordered a biopsy (without a blood test first) which just came back negative this morning. He basically dismissed me with a "sucks to be you" line, which is about par for the course for doctors. But after reading all this stuff on here I'm going to try going gluten free anyway, because it certainly seems likely that I am gluten intolerant or in some early stage of celiac. Should mention my dad had a negative gluten blood test and later a postive biopsy but had had symptoms for years (5, maybe 10, but he's a bit vague). He also now has osteoporosis, so I suspect he'd had celiac disease for many years.

My question is how long before I "should" feel better? I tried going gluten-free once for a week--the first 5 days I felt unbelievable--I was literally buzzing I had so much energy, but I didn't notice any change in my bowel habits, and then on about day 6 I was suddenly as tired as ever, so I just abandoned the attempt. I could have accidentally gotten gluten, I suppose, although I cook all my own food so I don't know how that would have happened. Is it normal to sort of yo-yo for a while? Do people usually feel better in a couple weeks? month? 6 months?

Oh guess I should introduce myself a bit more? 34, female, American living in Switzerland. Asthma since age 12, arthritis in knees (2 surgeries on left one for recurrent patellar dislocation), well the list goes on and on! It's hard to know what's relevent, especially after seeing the eyetic post. I didn't even list my eyetic on my complaints list...

Thanks so much!

Andrea

[CarlaB]

Andrea, with your family history, I definately think trying the diet is a good idea. Maybe they just missed the damage, maybe it's too early in the disease for you to have damage yet. I'm betting that you'll get better on the gluten-free diet.

If you don't get better, I'd look for what else could be causing your symptoms. There are many systemic diseases that all have similar symptoms. Like I said, in your case, it's likely to be gluten intolerance/celiac, but sometimes there's something else going on.

[Nantzie]

It sounds to me like you got glutened on day 6. Getting glutened is very easy and sometimes you don't even know where it came from. I haven't knowingly eaten gluten for over a year, and I still get glutened a couple times a month. It just gets you sometimes even if you do all your own cooking. I usually figure out where it came from, but there have been a few times where I still have no idea what happened.

Your quick improvement is common, although a lot of people take months to see improvement. After a while you'll be able to tell if you've been glutened based on your symptoms.

It is a roller coaster at first, partly because gluten can hide in a lot of things, including non-food things you wouldn't even think about (like cosmetics, shampoos, etc., and other personal care products). Then there's the cross-contamination aspect, which is probably what got you on day six.

There is a steep learning curve, but once you have the hang of it it's pretty easy.

I also had a negative biopsy. There are many people on this board who had either negative or inconclusive tests that tried the gluten-free diet with great success. We all consider ourselves to be in the same boat, whether celiac or non-celiac gluten intolerance. When the scientists figure all of this out, I bet there are a few different types of gluten-related conditions, some causing villi damage and some not.

Welcome to the board.

Nancy

[Nancym]

You might want to try giving up dairy too, for me gluten was only a piece of the puzzle. I also found supplementing B vitamins and D3 was helpful for the energy issues and brain clarity. Stick with it for at least a few months! It has taken me about 1.5 years to feel like I'm pretty much back to normal. Some things were fast, others much slower, but how can I complain?

[andreagrant]

Thanks everyone! Its so nice to not feel crazy about a 'hunch'. The biopsy took only two samples and I've also been reading about the various stages of celiac disease and the spectrum of gluten intolerance/allergy. Its funny--I guess I've been a bit naive about the medical system. I'm a scientist, so I just assumed that medical knowledge was based on the same kind of methodical testing that we do in physical sciences, but I'm learning its not true. Its often an art as much as anything, and the studies they do can be far from rigorous, or overlook obvious assumptions that render the results meaningless.

I am just checking out all the 'other ingredients' in my vitamins and whatever else I thought was gluten free but isn't (like the pickled beets I just bought tonight!).

Andrea

[CarlaB]

What is the questionable ingredient in the pickled beets? I never would have guessed they'd be a problem (but I would have read the label!).

[andreagrant]

What is the questionable ingredient in the pickled beets? I never would have guessed they'd be a problem (but I would have read the label!).

MSG! I can see this is going to be a challenge--my german is really not very good, nor are technical/medical/food type terms in most dictionaries. Anyone who's lived in Switzerland and can help me out would be *much* appreciated!!! I think I'm just going to buy only things without a label at all--if I see a zucchini then I know it's a zucchini and not harboring any gluten!

[CarlaB]

In the US MSG might be bad for you, but it is gluten-free. I don't know about other countries, but I found this website. Open Original Shared Link

[nora-n]

I am in europe too. I have not tested MSG here, actually....I am very sensitive.

i react to citric acid!

There was a discussion about citric acid and such things at the delphi celiac forum, and one person there who is very sensitive had been to europe and reacte to citric acid here. She tried to find out what it was made of, and here in europe it often comes form China and she had talked to someone who had inspected plants in china and they use any kind of starch , according to availability, wheat, rice, anything. (citric acid is made by taking starch or sugar or molases or starchy waste or whey and soaking it and then you throw in some moldy bread and then let it mold, and then they strain the stuff and clean it , there are two different methods, and then citric acid is left.....)

There was also someone posting about travelling to the far east and china who explained that he had talke to someone who understood the question, that the coks in the east get some all-purpoise flour which is rice sometimes, wheat, anything, it does not matter. They do not differentiate between flour and wheat flour. Makes sense with the citirc acid and MSG issue, it might bemade from wheat and some very sensitive people can react.

Well, the others at the delphi forum did not agree that it could matter. Celiacs would like some things left to eat........

Our celiac society website posted twice now that soy sauce is gluten-free, even if made from wheat, becase the gluten has been removed in the process, or been degraded in the process. The questions were for two products, not all in general. But I do not think such soy sauce is safe, what ever they say. I ead on a forum that kikkoman is notorious for saying that gluten in their soy sauce has been degrade in the fermentation process but that is not true.

The vinegar in the pickles might have gluten.....

nora

And I grew up in austria but do not live there now so I cannot comment much on german labels

[chrissy]

2 biopsies is not enough to catch patchy damage----if it were me i would ask to have the blood work done before i got too far into the gluten free diet.

[andreagrant]

I don't know anything about MSG here--I just read on one site that its possible its made with wheat. Since I'm trying to go gluten-free in order to 'diagnose' myself, I figure I need to be careful in the beginning so I can get a clear signal of my symptoms improving! I don't really have any idea about the regulations in Switzerland (we are *not* part of the EU) aside from the fact that meat has to be labeled with its country of origin (helpful, if a bit random...)

My doctor hasn't been overly helpful--he can be pretty condescending actually, and he and the GI doc were both incredulous that I could have celiac and not be seriously underweight. However I also don't completely understand the health care system and I seem to be trapped with this doctor for now. It's been a lot harder living abroad than I expected! Like others have said, I partly don't care if I have an official diagnosis--I just want to feel better and at least trying gluten-free is something I can just do on my own!

Andrea

[gfp]

Thanks everyone! Its so nice to not feel crazy about a 'hunch'. The biopsy took only two samples and I've also been reading about the various stages of celiac disease and the spectrum of gluten intolerance/allergy. Its funny--I guess I've been a bit naive about the medical system. I'm a scientist, so I just assumed that medical knowledge was based on the same kind of methodical testing that we do in physical sciences, but I'm learning its not true. Its often an art as much as anything, and the studies they do can be far from rigorous, or overlook obvious assumptions that render the results meaningless.

I am just checking out all the 'other ingredients' in my vitamins and whatever else I thought was gluten free but isn't (like the pickled beets I just bought tonight!).

Andrea

Oh please don't start me on this... !!!

Look up oxymoron and the definition is medical science!

[Nantzie]

Definitely... Doctors can be the worst part of any of this. I think there is such a difference between a doctor who just sees patients and doesn't further his knowledge, and a doctor who is truely interested in keeping up on current research. Add ego and a god-complex that some of them seem to develop and it's ridiculous.

I love my doctor. She barely knew anything about celiac or gluten intolerance. She had a couple patients who had been diagnosed before they were her patients, but that was about it. When I started on my odyssey, she ordered whatever tests I wanted, did the referrals I needed and supported me trying the diet even though everything came back negative. She was interested to hear what happened. Now she advises people who come in asking about celiac to try the diet even if the tests come back negative. I'm very lucky to have her as a doctor. She not only is interested in seeing patients, but she's interested in the science and research behind the conditions she sees people for.

You might want to start doing some research on doctors now and see if you can find any who are more well-versed on current information, or even one who knows they don't know everything. That way when you ARE able to change doctors, you'll know who to ask for.

Nancy