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osusanna

Gluten Challenge Time Frame

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For over 5 years I dealt with doctors telling me that all of my test results were "normal" even though I was complaining of chronic fatigue, Irritability, joint pain, brain fog, migranes, gas, bloating, eczema, and itchy blisters on my scalp. These symptoms became so bad that I would work one day and have to sleep the entire next day to be able to function. Eventuallly I quit my job entirely just so I could sleep enough during the day to take care of my family.

Finally a blood test alerted my 4th GP in as many years that an autoimune disease might be the cause. With further blood tests a Reumatologist actually diagnosed celiac and I have been gluten-free for 2 years now and 95% healthy.

My problem is that I am seeing a GI doctor now and he believes because I was not given an endoscopy I do not know for sure I have celiac. He recommends doing the challenge for awhile and then the endoscopy/biopsy. How long I asked? "A few weeks? Maybe months or it could take longer before a biopsy would show damage".

Not a very helpful answer

Have you taken the challenge?

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This is the problem with doing this:

You have been gluten-free for two whole years. If your villi were damaged, they have long healed. This GI wants you to purposely destroy your villi again, just to confirm that you can't tolerate gluten.

Some people here were told to do the gluten challenge, and it nearly killed them. It could trigger other autoimmune diseases, or cause other irreversible damage. You would have to be eating the equivalent of four slices of bread a day for at least three to six months to even have a remote chance of a positive biopsy. Possibly even a year or more.

If, on the other hand, you have 'only' a gluten intolerance, which normally attacks the nervous system, brain, thyroid etc. and not so much the intestines, you will make yourself possibly deathly ill for nothing, because no matter how long you eat gluten, your biopsy will still come back negative.

It is a good idea to find out what stops you from getting 100% well. But that can be (hopefully) accomplished without trying to destroy your villi and make you 100% unwell again!

Are you still consuming dairy? Soy? Either or both could be a problem. Or another intolerance altogether.

What are your remaining symptoms? Maybe some of the resident sleuths can help you figure out what the problem is.

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I consider it to be unethical to ask a diagnosed Celiac to do a gluten challenge. You have been diagnosed by a doctor skilled in autoimmune disorders, end of story. There's nothing left to prove to this GI doctor. If a GI doctor doesn't accept your Celiac diagnosis and work with you to figure out what else could be going on, you should find another one. Every doctor wants to run their own tests, but you shouldn't feel compelled to do those tests if they are going to hurt you. Please don't spend 6 months destoying your body just to have a pointless test POSSIBLY come out positive. It's definitely not worth it.

-Brian

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I agree stongly with the previous posts. I was only gluten free for about 3 months when my GI demanded a week long gluten challenge for biopsy. The challenge almost killed me with a severe GI bleed. I got my diagnosis without the biopsy because I was on the bathroom floor in extreme pain and bleeding freely from my rectum on the day of the biopsy. It was so not worth it. You have been diagnosed and IMHO you need to consult with a different doctor.

If you are still having issues have you checked every script and OTC med, with the maker not a pharmacist? Are you consuming a lot of mainstream 'gluten-free' food like the copious listing of Frito Lay products that are gluten free by label but heavily cross contaminated? Did you replace gluten with soy? Many of us have a problem with soy and casien (milk protein) and they can be difficult to avoid in processed foods. I learned the hard way that dairy free doesn't always mean casien free. Have you eliminated gluten from toiletries and nonfood sources? Many doctors don't think that is needed but for some of us the low levels accidently ingested or absorbed through mucous membranes may be enough to keep the antibody reaction in full swing.

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I just had my kid retested for celiac disease and we are waiting for the results.  Her doctor does not hesitate to test since I have a firm diagnosis.  I can also say that my PCP and GI  never hesitate to check for other AI issues either.  They know that you can develop more than one autoimmune disorder.  Better to catch it early before damage!   If you get an endoscopy, be sure to do a gluten challenge 2 to 4 weeks prior or your result will be negative!  
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