Very Frustrated!

[Katie B]

Hi everyone,

So, after being diagnosed as having IBS then having Celiac, then having small intestine bacterial overgrowth and perhaps not Celiac I'm left wondering what's what? I was also recently diagnosed with a pituitary disfunction so I can't produce vasopressin or cortisol - my endo. believes that since my pituitary is slightly smaller that it was attacked by an autoimmune disease... which would lead me right back to Celiac. Now my Gastro. wants me to eat gluten for 3 weeks and then he'll give me another blood test which may or may not show anything (tissue transglutamine, anti-gliadin antibody, anti endomysial antibody. I already tested negative for the other blood tests - test one showed I didn't have any antibodies and test two showed that my levels might be so low that I might not be able to produce the antibody. Test 3 - the scope showed that I had destroyed villi, however, the infection can result in the same destruction. I've been gluten-free for 3 months now and since I've been taking the replacement hormones (vasopressin and cortisol) am feeling great. I would like to get a final diagnosis on Celiac but fear that implications of being on gluten again. If I do have a diagnosis then I can qualify for a large tax deduction off of gluten-free foods. I can also know in the future what to look out for - and my doctors will be more aware as well.

Anybody else experience this? I guess at some point even if I don't get a firm diagnosis I'll just have to make a decision. There's no way I'm converting my kitchen back and forth and to be honest I'm getting quite used to eating gluten-free and don't even feel deprived...

Sigh... I know that the advice I'll get here will probably be skewed towards staying gluten-free but if anybody has a balanced view or has experienced something similar I would really appreciate your feedback.

Thanks!

[Wolicki]

Here's my opinion. Why not wait until you get the other issues under control, since symptoms can be misleading. Stay on your meds, get rid of the bad bugs. Once all that is done, then try out eating some gluten and see how you react. You will know pretty quickly if it is the problem.

Celiac is not one of those black and white diagnoses. Since the effects are systemic and doctors don't deal well with gray areas, many have been in the same situation. I hope you continue to feel better, whatever decision you make!

[ravenwoodglass]

If your total IGA is low eating all the gluten in the world won't give you a positive blood test. You have the gold standard for diagnosis, the villi damage and you feel better gluten free. IMHO your body has given you the answer. I do understand your desire for a firm diagnosis, it is too bad you have to literally (if you are celiac) poison yourself for up to three months to get that diagnosis. Do keep your doctor well informed of your reactions, if you have them, to the gluten challenge. Some doctors will diagnose based on the remission of symptoms gluten free and the recurring problems when the challenge is done. Hopefully if you react to the challenge that and the gold standard positive villi test you have already had done will be enough for the doctor to diagnose.

Another thing you could suggest to the doctor is that he rescope you now, since you have been gluten free and feeling better for 3 months. If when he rescopes the villi have repaired that should be diagnostic also.

[michelley65]

I was also diagnosed with a small intestinal bacterial overgrowth about a year and a half ago.Ive been on different meds for it..and nothing seemed to help.I realized on my own that certain foods would aggravate it(bloating,gas constantly,diahrea,ect)..those would be bread,noodles,ect.I told my doctor about it and he said that the bacteria feed off the carbs and produce gas,so I started cutting way down on the foods that irritated me,and eventually(about 5 weeks ago)went gluten free.I feel so much better without it...and wonder now about my diagnoses of s.i.b.o.You mentioned that you can claim the gluten free foods with a diagnoses of celiac...what about gluten intolerance?I was tested for celiac and it came back negative,but I know Im sensitive to it and would like to claim my expenses.Might I add,when I was tested my doctors assistant told me that it was ok that I was gluten free for a week and also eating gluten light for sometime..it wouldnt make a difference..I know now that they were wrong..I might be celiac afterall and will never know.

[Katie B]

Thanks everyone,

Sometimes it's just nice to share my frustration with people who understand. I know that there isn't a clear cut answer but at some point I just want to get healthy for good!

In response to Michelle - I've had two bouts of sibo and got rid of them by going on the specific carbohydrate diet. The first one I just scaled back everything and went gluten free and it disappeared. I started eating gluten again and it came back. After the second time I went on the specific carbohydrate diet and made my own lactose-free yogurt. I tried the antibiotic approach but while this was successful while I was on them once I was taken off I was back to having the infection. I've found that now I can eat rice, quinoa and other non-glutenous grains and the sibo hasn't flared up again. I think in the end I might never have an answer and I might just have to assume I have Celiac. It's certainly better than having another part of my body under attack - I'm not sure about being gluten-intolerant and tax deductions...it's definitely worth looking into though!

Thanks for listening! At least I'm coming to the end of a very long process.

[Black Sheep]

You have the gold standard for diagnosis, the villi damage and you feel better gluten free.

Those were my dr.'s exact words--the gold standard. Yesterday I had my 1 month app't. with her--1 month after having cut gluten from my diet, at her suggestion. I understand your desire for a "firm diagnosis", as I kept going back and forth on this, too, but my problem is, I don't have insurance. Which is why my doc didn't make me get tests! But I asked her yesterday about the tests, saying, "Without actually being tested, how will I know if I'm merely gluten intolerant, or a full-blown celiac?" And she said that if I really, really, want to, we can do the testing, but she also said, "The blood test is really nothing more than a screening. The biopsy is the Gold Standard for diagnosing, but really--does it matter? I mean, if you have all these health issues, and you cut out gluten and feel so much better, then your body has told you that obviously gluten was a big problem for you--does it really matter at that point what a test says?"

And I just sat there and thought about it a second and told her "No, you're right, it doesn't matter."

Not that all my health problems have suddenly and magically gone away--after all, it's only been a month! But, there's been enough of an improvement that I know for sure that gluten is poisonous to me, so that's all I need to know!

Although you did mention a tax deduction if you get a diagnosis....you must not be in the U.S.! So as someone who's self-employed, uninsured, and staring a this year's tax bill in the face at the moment, I can understand wanting a tax break. Still, let's say you don't get a firm diagnosis. No tax break. But, let's say you stay off gluten for a few months and find that bit by bit, you're starting to improve. Would the tax break still matter at that point?

I dunno, just something to think about.

[ravenwoodglass]

Hi everyone,

If I do have a diagnosis then I can qualify for a large tax deduction off of gluten-free foods.

Thanks!

I somehow missed this in my first reply.

If you are in the US please be aware that the tax break we get is not that great. We can only take a tax deduction after our medical expenses reach a certain percentage of our income. The year before my diagnosis that would have helped as we had 17 thousand dollars in copays for testing, specialists and drugs that did no good and in some cases a great deal of harm as at least 3 were pulled off the market while I was on them. I know that sounds like a lot for copays but my 'drug supply' of top shelf new drugs and trips to a very large hosptial and the MRI's, blood work at over a thousand dollars a pop for testing on 13 tubes at a time, the CT scans, the copays for neurologists, rhuematologists, different canes and supports for my joints etc all add up. Anyway since diagnosis 8 years ago I have needed a medical doctor about 10 times, mostly for checkups or early on for attempts at help with severe glutening and a severe sprain. Without being constantly sick I haven't even come close to the level of expense needed to take the tax break on the food. So in the end the tax break sounds good but for many of us it isn't something we can really take advantage of and feeling like a new painless person is to me worth much, much more than the little bit of a break the government would give us.

[Katie B]

Yes - I can totally agree. My dietician also pointed out that if I don't get a diagnosis and in 30 years will I start to cheat a little, however, having something randomly malfunction in your brain is very scary and I honestly don't think I'll ever cheat. Besides, I really don't feel deprived - I can eat a lot more now than a year ago so things to me are looking better.

In terms of the tax deductions I am in Canada and I was just reading that if you save your grocery bills and create a chart then foods that you buy that are gluten-free - let's say bread - would then be deducted to the cost of a normal gluten-filled loaf of bread. Some people can get up to $800.00 back in a year.

However, I was thinking about this yesterday and again, who really cares about money when you have your health? If I were completely healthy, I would be able to work more (right now I'm on short term disability), I could probably cook more (so could maybe save a bit of $ on some overpriced gluten-free foods) and life would simply be better.

Thanks again for your responses. This forum has been amazing and it's great that so many people are so well educated about this disease. It's really becoming a movement and the stats show that we have a long way to go in terms of accurately diagnosing people.

Katie

[michelley65]

I agree..who actually needs the diagnoses if you yourself know that gluten is the enemy!The tax break would be very nice to have..and I will still save my reciepts just incase anything changes,but for now all I can say is..."No more bellyachin!"