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Sick Already...
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7 posts in this topic

Yesterday was my first day to go back on gluten so that I can have my blood test. I am sooooo sick today. I have had diarrhea all day, and my head feels like it is out in outer space somewhere (anyone else get that?), I am also almost dizzy at times. Since I have been gluten-free for 2 months, but with 4 or 5 mistakes how long would you all say I need to stay on gluten before the test is done? I was thinking at least a month (I have to get my insurance straight anyway). I'm going to have to make sure I eat all my favorites that I can't have otherwise until my test...guess that is the bright side...lol. Anyway, thanks for being here all!

Deanna

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Ugg...it's also good that you are unhappy to be back on the gluten diet. :D Now when you go back you won't miss those foods anymore. I can't imagine going back on gluten, especially at this point -- just to eat that stuff would require great willpower for me. Good luck.

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Deanna,

My heart goes out to you... I know it must be hard. I found an old post on the internet about this subject and thought I'd post it.

Good luck and I hope you get your answer soon! When is your endo? Do you have an appointment yet?

Gretchen

http://www.enabling.org/ia/celiac/exp/exp98-1.html

Subject: how long must gluten challenge last?

It is often necessary to prescribe how much gluten to eat. I Ask patients to eat increasing amounts of gluten, starting from a cracker building up to 4 slices of whole bread a day and to keep taking that so long as they do not get too ill, but should get definite symptoms. When i left it up to the patient, it seems they ate less gluten and more sporadically. It is sometimes hard to wait to persuade the patient to wait long enough for damage to occur. While the standard 4 week challenge will pick up most it will not pick up all patients. In those patients who remain asymptomatic I continue to wait and monitor the antibodies as well as the development of symptoms and then biopsy. I also find it useful to review the original biopsy material and other primary information on which the original diagnosis was based. Sampling problems and interpretation are also issues.

There a few people I will not challenge, People who are so nutritionally deplete that might not tolerate the challenge, people who give a history of anaphylactic response that could be life threatening and possibly those with a history of severe neurologic problems.

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The most common figure I hear is three months for a challenge. But you might end up too sick to go even a month. If that happens, that would seem to answer the question without blood tests.

richard

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Well, like I have said in another post, my problem is that for my ex husband to allow my son to be tested I have to have a positive test myself. He won't go off of what I think, and a doctor may "expect".

Gretchen, I am not even having an endo. I am only at the blood test, because I have pretty much self diagnosed myself. This was after my first cousin found out about her condition and it sounded so much like me that I began researching. We will see if the blood test is enough for my ex, if it is then I won't even have the endo. I know I have this disease, now it is just proving it, ya know?

Thanks for your responses!

Deanna

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Deanna,

I don't know much about this test called the rectal challenge... but, might be worth asking your doctor. I have some info on a previous post about it (linked below) Apparently you don't need to be ingesting gluten for an accurate test.

Yes... I can understand the challenges in the need for a diagnosis... I can see why in your case, you'd want it.

Gretchen

http://www.glutenfreeforum.com/index.php?s...t=0entry15182

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Your exhusband sounds like a real caring, sensitive kind of guy - NOT. :angry:

Any chance you could threaten taking some kind of legal action? Some variation of withholding medical care might work . . . just a thought. No way I would eat gluten again for a challenge - I feel too good, am building muscle, gaining weight. Luckily (?) I am off the charts positive in all the tests and biopsy.

Is this to "prove" to your exhusband that he needs a restricted diet? Do you have him gluten-free when he's with you and he feels better? If he's getting sick every time he goes to see dad, maybe that will convince him.

My hubby's ex has whatever medical care she finds necessary for his daughter - I would not imagine trying to intervene in that. She's with her every day and knows what is best.

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
    • Personally, I would ask for the full Celiac panel and see what that shows.  I mean, the full Monty, not just cherry picking testing.  On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy.  This is how I was diagnosed and there is absolutely no doubt I have Celiac.  I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy.  Like your daughter, I was way too sick to have one done at the time.  They would not have agreed to use sedation because I was so anemic and malnourished and that ended that!  Good luck with whatever you decide!
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