Sick Already...

[Niteyx13]

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

[celiac3270]

Ugg...it's also good that you are unhappy to be back on the gluten diet. 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.

[GEF]

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

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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.

[lovegrov]

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

[Niteyx13]

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

[GEF]

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

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[crc0622]

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

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.