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sparkles

What Tests Specifically Need To Be Done?

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My daughter has seizures, IBS, and has had difficulty getting pregnant. I have been doing lots of reading here and her symptoms sound like they could be gluten related. She is going to her neurologist this week and after reading some of the articles that I pointed out to her, she has decided to talk to him about celiac disease. Specifically what tests should she ask the doctor to perform? She will not have an endoscopy because she had one for gallbladder problems and she "Code Blue" during the test. I am a celiac but she is not genetically related to me so if I passed on the gene, it was through nurture not nature (kidding). I know that this has probably been discussed before but I have been unsuccessful in pulling up the information. I am so computer challenged. I tried the side bar under symptoms, testing etc and the articles listed there were really old (1999) and felt that there must be newer stuff out there. I know Enterolab does testing and I searched their web site for the specific tests they do for celiac disease but could not find the specific tests listed. Please help if you can. Thanks!!!!! :)


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Enterolab does a gluten panel that includes gene testing, IgA antibodies, malabsorption and ttg for $369 (it included dairy back in May). They also test for soy/egg/yeast for $199.


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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My daughter has seizures, IBS, and has had difficulty getting pregnant. I have been doing lots of reading here and her symptoms sound like they could be gluten related. She is going to her neurologist this week and after reading some of the articles that I pointed out to her, she has decided to talk to him about celiac disease. Specifically what tests should she ask the doctor to perform? She will not have an endoscopy because she had one for gallbladder problems and she "Code Blue" during the test. I am a celiac but she is not genetically related to me so if I passed on the gene, it was through nurture not nature (kidding). I know that this has probably been discussed before but I have been unsuccessful in pulling up the information. I am so computer challenged. I tried the side bar under symptoms, testing etc and the articles listed there were really old (1999) and felt that there must be newer stuff out there. I know Enterolab does testing and I searched their web site for the specific tests they do for celiac disease but could not find the specific tests listed. Please help if you can. Thanks!!!!! :)

Just curious as I see you say you are Celiac. How did you get diagnosed? To answer your question about testing I had family doctor draw blood and send to a lab with the specific Celiac panel of tests including the gene test. Even if you are not genetically related your daughter could still have the gene.

Tom

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I had been ill for about 20 years with bouts of explosive D and a whole lot of vomiting. I had migraines, depression, upper GI problems, colon cancer, muscle aches and pains, nueropathy, fertility problems, horrible periods, emotional outbursts, brain fog, fatigue. After a year of being so ill that I was missing lots of work, I finally went into the hospital for 10 days where they tested everything from top to bottom. I had been vomiting and had D for about a month straight and finally the doc said we have to put you in the hospital to see what is wrong. I went through a battery of tests. I remember coming out of the endoscopy and the doc saying, "We found something and you need to come in to see me." Since I had had colon cancer, I was more concerned about the polyp he had found and when that test came back negative, I made the decision not to see him because he was a specialist and I could not afford another bill. My own doc never read his report until I came into his office several months later (still with chronic D and vomiting) but this time I was covered with bruises. I had had a friend in high school who died of luekemia and I remember her arms looking this way. I figured that I had beat colon cancer only to die of luekemia. The doc did some bood tests, determined that I had a B12 deficiency, and said, "They had to have found something when we did all that testing in the hospital." He sat with me in the exam room and went over all the reports. There it was in black and white, "Diagnosis: Celiac Sprue". Someone had filed the report in my file and it had never crossed his desk...the docs sign off on all the reports. This one was not signed off on. My villa were so flattened that the even without a biopsy report the diagnosis could have been made. Since I was heavy about 220#, celiac disease was not even a consideration. That was in June of 2002. I went off gluten immediately. Within 2 months, I felt like God had given me my life back. So many of the problems that I had disappeared or lessened. I still have the neuropathy, an esophagus that is badly scarred, B12 deficiency, and am still battling weight (220#) BUT the other GI problems have disappeared as has the depression, migraines, brain fog, some of the fatigue, emotional outbursts..... I am still angry at times when I look back and see all the suffering that I went through....all because I was fat and celiac disease was automatically crossed off the list of possible reasons for all of my symptoms. For all those years, I felt like a hypocondriac (sp). I have the medical files to prove it. To think a simple blood test could have eliminated so much. My mother (who passed away in 1983) had many of the same symptoms that I did only she was chronically thin with ulcers, and many vitamin deficiencies. I know that she had UNDIAGNOSED celiac disease. When I look at the symptoms, she was a classic example of someone with celiac disease and she too suffered undiagnosed. BUT I try not to let the anger overtake me. I have my life back and I don't suffer from migraines and explosive D. My first marriage ended in 2001 and I think maybe things might have been different if I had just known what was wrong with me. BUT that is all in the past.... Like I said, I have my life back. I have since remarried and am really happy. I have one biological child and even though she has some symptoms and one of her blood tests came back showing a celiac disease marker, she had a negative biopsy so the doc says she does not have celiac disease. In my heart, I am sure that eventually her symptoms will come out with a vengeance but right now at 22, she is content with a diagnosis of IBS. I hope that I am wrong and that she escaped the celiac disease gene but time will tell. so that is my story. It is long, I apologize for that, but it is like the story of so many others who have suffered and been ignored or treated as though they were crazy and making up symptoms or told that the symptoms could not be as bad as we think they are. Even though, I constantly fight the weight issue, I am thankful that I know what is wrong and that I have control over my symptoms and my disease by just watching what I put in my mouth.


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If your daughter can afford the testing I would highly recommend enterolab. If she has IBS, she more than likely already has a problem with gluten. With as strongly as it attacked you and your mother she should definately be more concerned and checking the IBS out.

As far as blood tests she would need the celiac blood panel, but if she's already gone that route definately get enterolab done. My family didn't have obvious symptoms and my oldest son already had mild malabsorption and he was tested at a little over 3 1/2 years of age. If we had continued our diet I'm sure he would have gotten much worse.


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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