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Gluten Challenge Time Frame


osusanna

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osusanna Newbie

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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Ursa Major Collaborator

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.

GlutenWrangler Contributor

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

ravenwoodglass Mentor

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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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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