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doulagrl

Had First Doctor's Appt Today

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Hey Everyone,

I went to see a doctor today for the first time about my suspected celiac disease. He was very understanding and after asking a bunch of questions and discussing my health history says my symptoms and then improvement on a gluten free diet are strong indicators of either celiac disease or gluten intolerance.

He called a doctor who is a bio-chemist and specialist on blood work and asked him if I could still take the blood test since I had been gluten free for 3 months. The doctor told him to go ahead and order it but it may give a false negative and if that happens then I should consider doing a gluten challenge after I have the baby (I'm 28wks pregnant) and get retested. He said that the test is quite sensitive and may still pick up residual antibodies but if I wanted to improve my chances of a positive test this time around that I should go back on a high gluten diet for the next 2wks and then have the bloodwork done. Since I react so quickly to gluten (within 24hrs) such a short challenge may be enough to boost my levels to get a positive test. My doctor said it was up to me and he would fully understand if I wanted to stay gluten free and have the bloodwork done and that if it came back negative he would be happy to recheck me if I wanted to wait a while and then do a gluten challenge. He also said even if the second test came back negative he would see if he could get me approved for a biopsy or perhaps consider diagnosing me based on me keeping a food diary that showed consistent connections between gluten and my symptoms. Unfortunately all of those options require me going back on gluten for a period of time in order to get an official diagnosis.

If I was still living in the US then it wouldn't be worth it but here in England the National Health Service will pay for some of my gluten free food. Things are very tight for us financially and this would be a huge benefit to have this help. I'm considering doing the two week thing in hopes that I can get a positive test result and they will go ahead and give me the prescription for the gluten free food. I would rather do it for two weeks now at this point in my pregnancy than when I'm breastfeeding in case this baby has celiac disease. Doctor also said to bring my 2.5yr old son in a soon as possible for blood tests since he's not on a gluten free diet yet and has a lot of the indicators. So I now have to decide am I willing to be exhausted, constipated and puke for two weeks in the hopes of getting a positive test result. My major symptoms are usually all gone within 72hrs of coming off of gluten so it wouldn't be a long term thing to get over it again.

Mel

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If you are feeling better gluten free, then what is the benefit of doing a gluten challenge during pregnancy? If you truly are celiac, then why risk further damaging your villi while you are pregnant? Because damage means you may not fully absorb the necessary nutrients, it may affect the essential nutrition that you provide your baby.

Michelle

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I wouldn't want to risk it myself. If your son tests positive then you can assume you would have been positive. From your quick reaction to gluten it certainly sounds like it's something you need to keep out of your diet.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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