Oh Boy... Help Please

[shanbr]

Ok, been horribly sick, i have RA but my inflammation was in the muscles etc. and when my stomach got worse so did the rest of my body.

So, doc did a test, made me get off all gluten (i know milk gets me so i was off it) and see how it goes. So I did and felt unbelieveably better and then i drank juice by accident that i thought was gluten-free and stomach freaked out and felt like throwing up and am not hungry still (next day).

Anyway, i know how horribly bad i felt with that one drink. Now he wants me to eat gluten for a couple weeks and then test for Celiac.

I am "afraid" to eat it as i know what it will do. My stomach hurts so much when i eat it and i flair up to where i walk with crutches because the cane isn't strong enough for my weight when my legs and feet swell up.

I don't know what to do. From what I understand, it can only be helped by not eating gluten, so what can a doc do for me? I already get checkups on the stomach etc. So all the test will do is give paper proof.

I am just afraid to eat it again. The last time he wanted to test me and I ate gluten I couldn't walk (way before) my feet were so bad i couldn't get to teh doctors office.

If i try it again, i won't be able to walk (i am sure).

It's all a big mess. Do i really need the test?

[nikki-uk]

It's all a big mess. Do i really need the test?

Only if - you feel you might struggle sticking to the diet (it's a life long comittment!)

Do you need a 'formal' diagnosis??

It sounds as if being gluten-free eases your pain, and your right... the only cure is a gluten-free diet

Incidentally, my hubby was diagnosed with Psoriatic Arthritis 2 years prior to his diagnosis of celiac disease.

He has found his joint pain has eased alot by being gluten-free

Good Luck!

[SunnyDyRain]

That is a question you have to answer yourself. I needed to have some doctor tell me what I was. I got that with a blood test, and that was enough for me. I was not going to stay on gluten and be sick for the biopsy.

Some people only diagnose thier problems with dietary response, and that is all they need. I have heard in some countries if you are biopsied, you can get tax relief.

You don't need a diagnosis because there is nothing to treat it with a perscription or treatment. You can eat gluten free without supervison.

If I were you, and the symtoms are so bad, and you see such an improvment, i'd tell the doctor where to go!

From what I understand you can also get entrolabs done, they can be done while gluten-free and they are sometimes good enough for a "diagnois" for a doctor.

[Murph]

I wouldn't eat the gluten for the test. It does too many terrible things to me. The jackass doc at Stanford wouldn't let go of it.

Stay gluten-free & be well.

If u need a diag, maybe the genetic test will work tho not all biopsy-confirmed celiacs have DQ2/8.

[shanbr]

Thank you so much, you all make me feel "wonderful". My husband is happy too

Thank you, I am just too afraid to eat it, not to mention i can think better without it in my system, concentration was very hard for me.

[nikki-uk]

Thank you so much, you all make me feel "wonderful". My husband is happy too

Thank you, I am just too afraid to eat it, not to mention i can think better without it in my system, concentration was very hard for me.

Hope you continue to feel better!!

[Susanna]

Sorry you've been so miserable. Glad the gluten-free life is helping you. Whether or not to ingest gluten in order to gain a more accurate test is a personal decision. For me, I don't think I would do it, knowing what I know now. It's like doctors are saying to us celiacs, "We think the poison is hurting/poisoning you, but could you just keep eating the poison until we're sure?" I mean puh-lease! We can do gene-mapping now for pete's sake, why do we have to ingest something that's arsenic to us to get our diagnosis? It seems kinda crazy to hurt ourselves in order to be tested.

You might just try the Enterolab route, as someone already suggested--you pay privately for it and send in a stool specimen.

And, as someone else said, if you think you're sure gluten is the problem, and you can commit to a life off of gluten, why put yourself thru the testing process?

My friend had terrible joint pain and swelling--her naturopath told her to get off gluten, and viola, her symptoms magically and quickly resolved.

Good luck,

Susanna

[lob6796]

That is a question you have to answer yourself. I needed to have some doctor tell me what I was. I got that with a blood test, and that was enough for me. I was not going to stay on gluten and be sick for the biopsy.

Some people only diagnose thier problems with dietary response, and that is all they need. I have heard in some countries if you are biopsied, you can get tax relief.

You don't need a diagnosis because there is nothing to treat it with a perscription or treatment. You can eat gluten free without supervison.

If I were you, and the symtoms are so bad, and you see such an improvment, i'd tell the doctor where to go!

From what I understand you can also get entrolabs done, they can be done while gluten-free and they are sometimes good enough for a "diagnois" for a doctor.

In the US you get a tax relief if you have a positive biopsy. And for some with horrendous medical bills, it is worth it. I am still trying to make the decision myself whether or not to keep eating gluten until my biopsy. On one hand, I know I would feel so much better if I stopped the gluten. On the other, the biopsy would give me some more definitive answers, a good idea of how much damage my body has had done to it, and a "real" diagnosis for purposes of tax relief, etc. It's a personal choice for sure.

[happygirl]

shanbr: I think that its two different stories about the biopsy. Its one thing if you haven't gone gluten-free....but its another story to go gluten free, and then ask someone to go back to eating gluten for a prolonged period of time. The first scenario, I usually recommend it (if it is financially possible, etc). The second situation---I would support someone either way. I don't think its worth being debilitated and sick for weeks/months, though.

There are all types of people on this board: some have official dx, some don't....we don't care, really----just happy you are here and hopefully finding answers.

Best of luck to you, and your improved health.

[darlindeb25]

I do not understand why he didn't schedule a biospy before having you try gluten free. That was when he should have done it. I know pain and know it well, if I were you, I would not put myself through that pain. A diagnosis of celiac disease is not that important, I mean having it on paper isn't. I do not have a diagnosis on paper and there is no doubt in my mind that I am celiac. I will never do a gluten challenge just to have it on paper.

I would put my health first. What if while you are eating gluten for a test and you swell all up again, then fall and break a bone. It's just not worth it, in my opinion.

[Betty in Texas]

You know your body better than any Dr. most of them only knows there prescripton pad and uses it a lot more than they should but that's where they get all there kickbacks ,and nice trips.

[Betty in Texas]

I hve never heard of a tax releif in the U.S. unless you spend a lot of extra money on gluted free food . The gov is not going to give you any thing you just may get a few dollors back on the hundreds you have spent . You have to spend the money first , pennies on the hundreds that's the way the tax system works we work for the gov.

[loco-ladi]

I spent years trying to convince my dr this was my problem, still can't convince him and have been 100% gluten-free for a couple months now (was 75% gluten-free before that I figure due to me not reading in this forum more during that time, thats the reason for the signature, lol)

I have no blood tests, no biopsy and no DNA tests, only thing I have is I am doing the diet and i feel better....

That is good enough for me, you need to decide for yourself if you want to return to gluten in your diet or not, its your body, your discomfort and your pain we cannot make this choice for you.

either way you decide we will still all offer our support to you

[Karen B.]

I don't think the doc knows what he's talking about. Two weeks might not do it and I can't see doing it for two miserable months.

https://www.celiac.com/st_prod.html?p_prodi...-37107464234.9e

How long must gluten be taken for the serological tests to be meaningful?

Celiac.com Sponsor:

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing celiac disease is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with celiac disease.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

[lob6796]

I hve never heard of a tax releif in the U.S. unless you spend a lot of extra money on gluted free food . The gov is not going to give you any thing you just may get a few dollors back on the hundreds you have spent . You have to spend the money first , pennies on the hundreds that's the way the tax system works we work for the gov.

If you spend over 7.5% of your gross adjusted income on unreimbursed medical expenses (which include the 20% most people pay whenever they have a procedure done, all copays for prescriptions/visits, etc) then you can claim that as a deduction on your taxes. If you have celiac, you can also deduct the difference between what you would have spent on an item and the cost of that item as a gluten free food cost you. (Regular bread $2, Gluten free bread $5, tax deduction = $3) I looked today and you don't actually need biopsy results, you only need a letter from your doctor stating that a gluten free diet is medically necessary for you. It requires you to save your grocery receipts just like you would save your medical receipts, but it's worth it to save the extra money in my opinion.

[Emily Elizabeth]

If you spend over 7.5% of your gross adjusted income on unreimbursed medical expenses (which include the 20% most people pay whenever they have a procedure done, all copays for prescriptions/visits, etc) then you can claim that as a deduction on your taxes. If you have celiac, you can also deduct the difference between what you would have spent on an item and the cost of that item as a gluten free food cost you. (Regular bread $2, Gluten free bread $5, tax deduction = $3) I looked today and you don't actually need biopsy results, you only need a letter from your doctor stating that a gluten free diet is medically necessary for you. It requires you to save your grocery receipts just like you would save your medical receipts, but it's worth it to save the extra money in my opinion.

That's wonderful news! I am definitely going to give this a try. Do you know how you constitute what the price of the regular product is? Do you simply choose a popular brand as a base point? Thanks for posting this.

[Karen B.]

That's wonderful news! I am definitely going to give this a try. Do you know how you constitute what the price of the regular product is? Do you simply choose a popular brand as a base point? Thanks for posting this.

Celiac Disease & Gluten-Free Food Tax Deduction Info

This deduction is for diagnosed celiacs only. Please keep in mind that you may be audited by the IRS should you attempt this deduction...document everything!

https://www.celiac.com/st_main.html?p_catid...-56107425130.04

[ravenwoodglass]

On the tax deduction issue, we were overjoyed when I was first diagnosed that we would be able to deduct the extra expense, we had been spending a lot out of pocket even with good insurance. I was diagnosed at the end of the year and started squirreling away those reciepts. However at the end of the next year at tax time we found that our usual 17 grand in copays for scripts, tests and doctors visits now only totaled a few hundred for routine stuff like mammograms. Thus we saved all those reciepts for 'nothing' We also found as time went on that we really use very little 'specialty food', mostly breads and crackers and such. The main things that qualify.