Uncertainty

[aafandi]

How long is enough on the gluten-free diet with no improvement?

What if im in doubt because im not improving much, and the diagnoses are not so certain to doctors?

I mean I have always suffered from what I and doctors thought is IBS, all in my head. For seven years or so, I always tested for bacterial overgrowth and always came back positive. Always took a course of anti-biotic (xifaxan) prescribed by my doctor then (Dr. Pimintol of LA) suffered from moderate (not sever) reactive hypoglycemia, weakness, anxiety, mild depression, joint pain, lack motivation, can't concentrate, sometimes panic attacks, and go on with the unclear symptoms, however the worst of all is to eat a super balanced meal (gluten free), and still get blood sugar to drop to 70 in an hour or so. Too bloated to eat again and feels weak. plus that the diet itself has caused additional pressure and anxiety to me. I would stick to a single type of food if I see improvement, but my improvement is little, or only clinical.

six months ago, a doctor in europe recommended a stool analysis, which I did, he said that i have some fat and protien mal-absorption, in addition to the gluten IGG or what so ever, the number came back to 11.5 (max 10) so i was put on a gluten free diet. also because i was on antibiotics, i had some candida in stool analysis. nystatin was prescribed.

My food was limited so i started to have more eggs and milk to make up for the protein and have verity in food. Four months later and i still feel pretty bad. so i went back to doctor and he said that my stool fat and protein mal-absorption is gone, but the gluten problem remains.

he rain some sensitivity tests (blood) and it says i'm highly sensitive to milk, eggs, banana, hazelnuts, and little other things that i have been avoiding for over four weeks. No major improvement.

I was put on Librium twice per day (6.25 mg each) to cope with life, now i was told after four months to reduce it and cut it off, and that my problem is not entirely physical, it must be mental as well since im still complaining about weakness, bloating, mild depression, anxiety, and above all, HYPOGLYCEMIA.

Those who are diagnosed properly (by endoscopy at least) are lucky in my opinion, and those who improve as well on diet.

How long is too long??? how long is enough on this diet if not much improvement has been shown, I mean I even went for my fifth endoscopy, colonoscopy and celiac was not proven, we even went for the camera pill and had some MRIs done. Im wondering if someone has an advice.

All gastros i spoke to said the stool test for gluten is not accurate, and not improving entirely in almost SIX MONTHS on a strict gluten free diet doesn't make sense.....any advice please weather to leave the diet or not, doctor said try and see if you get any worse or not.....

Thanks

[starrytrekchic]

First...are you sure you're entirely gluten free? It can lurk anywhere--spices, natural flavors, etc, in the ingredients list. Also, things like barley and rye don't have to be listed on the allergy alerts at the bottom. The manufacturers also don't have to list cross contamination (some do), so you could be getting glutened there. In addition there are some products that are theoretically gluten free, but they still give many celiacs reactions--like grain alcohols.

I've recently been gluten by Lindt chocolate (cross contaminated with chocolate made with barley) even though barley never appeared anywhere on the ingredients or warnings. Same thing goes for things like corn chips (usually made on the same manufacturing lines as wheat) and a bunch of other staples.

And once you're outside the food--what about lotions, hair products/shampoos, pet food, and non-edibles that contain gluten? All of these need to be gluten free, else you're giving yourself a continual source of contamination throughout the day.

Is your household gluten free? Do you have old cooking things that might be coated in gluten (toaster, colander, scratched pans). Do your SO/kids/family members eat gluten? You could be getting cross-contaminated there if they aren't careful.

If all that is taken care of, you could be dealing with secondary food allergies. If you don't have a clear, concise order of events that you go through when you're glutened, you might be confusing your reactions to the foods you listed with gluten reactions. On the plus side, those sorts of things are common, and do tend to clear up once you've been on the diet long enough--assuming you avoid them for months at a time.

You certainly sound celiac, from the descriptions you're giving--I'd just make sure you really are gluten free.

[tarnalberry]

Generally, if you're uncertain, I would suggest three months of COMPLETELY gluten free. (Make sure you've eliminated all sources - lots of cereals have barley malt (like corn flakes and rice crispies), regular soy sauce has it, beer, there's even one flavor variety of tomato paste that has it. Make sure you've eliminated all cross contamination - no shared toasters, dedicated cutting boards, new toaster, no shared condiments (butter/peanut butter/jam), no crumbs from other eaters in your house near your food, etc. Make sure you aren't getting anything from other people - a significant other kissing you after eating gluten, kids putting crumby hands on you/your clothes, someone cooking with flour in your kitchen, etc.)

If, after three months completely gluten free (and it may take quite a while just to be confident you ARE completely gluten free), you see no changes, I would do a dietary challenge, and eat a bunch of gluten for a couple of days. (I wouldn't cook it in my own kitchen, though!) If symptoms get worse from being gluten free and then eating it again, you have a pretty strong indication that you have an issue with gluten.

It'd be a mistake to think that going gluten free is going to clear up ALL your symptoms even if you are gluten intolerant. If there are nutritional deficiencies caused by malabsorption, it can take a very long time, and supplementation, to fix the symptoms caused by the deficiencies. And you can certainly have something along with celiac causing problems. So don't look for "feeling totally different and better", just look to see if you're getting any noticeable positive improvement, even if it's just 25%.

I'm no doctor, of course, and this is just my opinion on how I'd do it. (I *did* do a dietary challenge after inconclusive blood results.)

[aafandi]

Thank you for your replies...

My doctor said that i don't have to worry about being in a gluten free house, as long as things are cleaned well, and that's how it's been in the last 5 plus months. I improved when it comes to malabsorption of fat and protein in stool analysis, but i am in doubt of the stool test for celiac. so many doctors say it's not an acceptable screening method for gluten, or not accurate, and going gluten-free for over five months should clear my abdominal symptoms at least...

YES there is improvement, but honestly not worth the extra anxiety/depression that the diet puts on me...

I am very strict with my gluten-free diet, i don't eat anything unless it says Gluten Free, i use my own toaster and so on, and finally, my food is so limited and basic, and lacks all kinds of sauces (unless gluten-free).

I feel that Im just suffering from Bacterial overgrowth as before, plus other things....

I also susbected that the one time my stool analysis showed mal-absorption was due to taking Xifaxan antibiotics before the test and due to the presence of candida....

DOES ANYONE KNOW IF ITS TRUE THAT GOING BACK TO GLUTEN IS A LOT OF TROUBLE EVEN IF IM NOT A CELIAC, NOR GLUTEN INTOLERANCE. SOME PPL SAY IT TAKES SO LONG TO DIGEST AGAIN.

[starrytrekchic]

Since you're feeling marginally better, I'd stick with it, but also eliminate everything else you're having problems with for 2-4 more months. And spend that time investigating any other possible sources of being glutened.

However, if you want to go back to eating gluten to see how it makes you feel, that's fine too. Normal people don't have any problem digesting things with gluten, so if your symptoms suddenly get worse, you'll know that's the reason.

Also, what about lactose intolerance? Even if you tested free of that pre-gluten-free diet, it's one of those things that will develop temporarily in the early stages of the diet (did for me to some degree.) Also check for things like casein intolerance, which can also mimic a gluten reaction and can develop after going gluten free.