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JustMe75

Genetic Testing

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Ok, I am convinced I have some sort of gluten intolerence but I have some questions and need some advice. I have been on the gluten-free diet for about 4 weeks now (except for a few accidents) and I feel so much better. Before the diet change I had a negative blood test (I think they tested for everything, my results post is gone now) and my very ignorant GI doctor told my how dangerous a biopsy is and I could not have celiac and not to worry myself with going wheat free or gluten free, I had IBS. I decided to try gluten free anyway. My symptoms were frequent D to the point where I was afraid to go on long car rides, out on our boat, and lived in fear that I wouldn't have access to a bathroom. I was sick all the time. I couldn't eat anything! My symptoms are probably 90% gone! I never thought it would cure my daily headaches and my frequent depression but they are almost completly gone as well! I was on Lexapro a few years ago for depression (quit taking it because of side effects) and I feel like I did then. I feel like I can handle life, I still get stressed but I don't feel like life is impossible. So I have to say... Yeah! I finally, after 20 years, fell good!

This brings me to my question. I decided not to have the biopsy because I wouldn't believe it if it were negative, so why take the chance. I don't feel like I need an official diagnosis anymore, but I am concerned that if it is really celiac that I have and not just gluten intolerent, should I be concerned about my kids having celiac? My kids are 15, 13 and 11 (I have 2 step kids too if you read my other posts that say I have 5 kids :) ) My 15 year old daughter started having stomach problems about a year ago and she tried going gluten-free with me but we didn't notice much of a difference with her. She stopped about 2 1/2 weeks into it. It's so much easier to see a quick response when your D goes away, she didn't have D she had C and is VERY moody (might be a teen girl thing) and she is tired all the time. My younger two don't have stomach issues but my 13 year old son has ADHD and a severe speech problem. He isn't diagnosed, but is a textbook Aspergers kid. My 11 year old daughter has some attention problems. She has struggled every single year and I really think she has a learning problem. My mom has fibromyalgia, cronic fatigue and is an undiagnosed bipolar. Are these enough sysptoms to be celiac suspecious?

Back to my question. Would genetic testing tell me if it is celiac and not just intollerence? Obviously for me I don't care what the "label" is but if its celiac I don't want my kids to be damaging their bodies since there would be a good chance at least one of them would have it too. I didn't do the enterolab because I read they don't diagnose celiac just gluten intolerence, and I have already diagnosed that for myself.

My other option isn't really an option. I would have a very hard time convincing them to try gluten-free without something more definate. At their age even if I only cooked gluten-free they could still sneak it at school, at their friends houses and not to mention weekends at their dads house. And I don't think I could pay them to give a stool sample for enterolab testing.

If I decide to do a biopsy, have I been off gluten too long to see damage? I am willing to do it and I have great insurance. I could change doctors too.

So to sum it all up is there a way to tell if its celiac?

Sorry about this being so long and rambling. I am obsessive and I overthink everything! And since I can't ask a doctor I figured I should ask all you experts :D

Thank you for being a wonderful support group!

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Genetic testing, which Enterolab does do BTW, will not rule celiac in or out. You can have celiac without "celiac genes." You can have a just as serious gluten intolerance without specific genes or doctor-diagnosed or -diagnosible celiac.

Your children may have gluten and/or casein issues. You could test them with Enterolab.

I wouldn't go with the results of a short trial of a gluten-free diet with your daughter. Constipation as a symptom seems to take quite a long time to resolve. Also, if she was still consuming dairy, that could explain her problems right there.

I haven't had my children tested, but they lack any symptoms. They are young adults, too, so I couldn't make them test if they didn't want to. They are alert to the possibility, anyway.

You may wish to read up on the Gluten-free Casein-free diet. Also, in the other food sensitivities forum, I recently posted a link to a discussion of a recent study about hyperactivity and particular food additives.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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"I don't feel like I need an official diagnosis anymore, but I am concerned that if it is really celiac that I have and not just gluten intolerent, should I be concerned about my kids having celiac? My kids are 15, 13 and 11 (I have 2 step kids too if you read my other posts that say I have 5 kids ) My 15 year old daughter started having stomach problems about a year ago and she tried going gluten-free with me but we didn't notice much of a difference with her. She stopped about 2 1/2 weeks into it. It's so much easier to see a quick response when your D goes away, she didn't have D she had C and is VERY moody (might be a teen girl thing) and she is tired all the time. My younger two don't have stomach issues but my 13 year old son has ADHD and a severe speech problem. He isn't diagnosed, but is a textbook Aspergers kid. My 11 year old daughter has some attention problems. She has struggled every single year and I really think she has a learning problem. My mom has fibromyalgia, cronic fatigue and is an undiagnosed bipolar. Are these enough sysptoms to be celiac suspecious?"

Sure sounds like a gluten intolerant or celiac family to me. I have bolded part of the quote that really needs to be cleared up. Gluten intolerance should never have the word JUST in front of it. It is just as serious and life changing as 'true celiac' and also is carried in the genes. If I was in your shoes I would see if the kids ped would run the blood tests then NO MATTER WHAT THE RESULTS give the diet a good shot. I would simply make the whole house gluten free. Your 13 year old and 11 are the ones that I would concentrate on the most although I think it is important for the older girl also. My DS has Aspergers and it makes the teen years hell for these kids. If I had only known then that he had a gluten issue life would have been very different for him. He has been gluten-free now for 4 years, really strictly the last 2. The difference in him in just a couple of months was amazing but after a couple of years it was almost like the aspergers never existed. I am not saying he is 'cured' but now at 25 he functions much more normally and is even able to make freinds and ask girls out. Something he couldn't do under a gluten cloud. Gluten and the resulting brain fog can also cause learning problems as it can mess with memory. If you can talk your Mom into the diet also she will most likely find her fibro and CFS gone within a relatively short time.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I was diagnosed in 2003 with Celiac Disease when I was 38 years old. I had a painful flare up that sent me to the ER and they admitted me and ran many tests and procedures. I did go ahead with the endoscopy and biopsy which proved the diagnoses 100%. Even though (as with many procedures) there are risks involved I decided to go ahead with the procedure because the GI doctor who performed it had a great deal of experience in this procedure and knowledge. This flare up was my second one I had in a year and which lead to the diagnoses. The first time I had the flare up I went to the ER but the ER doctor was ignorant and really wasn't interested in finding out what was wrong with me and brushed it off to being a bladder infection. Two years ago I even had an ER doctor tell me that Celiac Disease is an allergy to CORN NOT WHEAT! I couldn't believe how ignorant and rude she was with me. And by this time I already had done the endless hours of research on the disease since being diagnosed with Celiac. So I understand conciderably what you mean about how some doctors can be so ignorant to this. I would think the best thing to do is research doctors in your area who specialize in Celiac Disease. It makes a world of difference when you can talk to a doctor who knows what you're going through.

In my case though, since my diagnoses, I have gotten worse and they say I am ultra sensitive to gluten and from what they can see from the many tests done over the years my small intestines have been severely damaged. I have chronic abdomenal pain (along with all the other symptoms) that can go from tolerable to severe at any time. In the beginning I only had flare ups once to maybe three times in a year but now I can have them once to three times a month with them lasting a day or up to over a week. This is also with being on a gluten free diet, checking all products I use that could have gluten in it such as toothpaste, mouth wash, ect., and even checking all medications I take with the manufactures to make sure they are gluten free AND if there is any possibility of their gluten free medications to have been cross contaminated with any other gluten containing products that they might make in their plant. I found out that gluten is used in many forms of medication and the only kind that doesn't have any gluten or chance of cross contamination are by injections.

I have been working with a pain specialist and a GI doctor who (luckily) know what I am going through and specialize in this field. I've been seeing them for a few months so far and they have had me try a various of different medications to see which works better. Last time I was in the hospital the previous doctors were seriously thinking of putting me on IV meds for at home since they worked everytime I've been in the hospital ( and that they are 100% gluten free ). But I didn't want to have a central line or pic line put in let alone be constantly on IV meds. So my new doctors understand how I feel and we've been pretty much going through "trial and error" on the different medications and hopefully find something that will help me. But if we don't find anything I dread what might be the inevitable.

In the hospital although, one medication I have noticed that always has really helped me with my severe case of celiac has been Benadryl Inj. / 50mg. I noticed that when I got it along with my other medications at the same time, all of the medications seemed to help more rather than not receiving Benadryl Inj. with my medications. So I did some research and found out on Benadryl's FAQ web page it states that OTHER uses for it is a antispasmatic as well as for a sleep aid, and nausia. Also it stated that even though it doesn't contain gluten there is a chance for cross contamination. And since I can't take Benadryl in pill form .....I also found out you can get a prescription for it in a pre made injection pen of 50mg that comes in a package of ten ( I guess kinda like an epi pen ) and also it's available in vials ( like insulin for a diabetic). This to me doesn't sound too bad if given with the right combination of my other medications (with them being in gluten free pill form). So next time, I see my doctors this is our next thing we'll be trying. Hopefully this will work. It's seems better to take a shot of Benadryl now and then with a severe flare up ........ than having to take all my medications by injections in a central/pic line.

Yes, I know, it's been a "pain" staking ordeal in many ways! LOL! But if any of this leads to some type of relief and regain my life back (not to mention not having to go to the hospital anymore!) I think I'll try it.

I even have to worry about cross contamination at home with using house hold items such as utensils, plates/cups, pots and pans, etc. So I have my own that I only use as well as my own pre-made gluten free groceries and even the common items such as butter, peanut butter, etc.. But this is because of how severe my case of Celiac is.

I have three teenagers and my oldest who's 19 years old, is the only one who developed any type of food allergy. She is allergic so far only to certain fruits, vegetables, and nuts. No signs of Celiac as of yet and hopefully she won't get it in the future. But she knows about the possibility of getting it later in life and has a great deal of knowledge of it by helping me deal with it. My two sons, ages 17 and 16, don't have any food allergies at all - only sinus allergies. I have read that Celiac Disease can be heretitary but I'm the first one in my family to have gotten it - well, as far as we know. My Mom has IBS as well as a few relatives on her side of the family too. There has been history of some other intestinal disorders also on her side of the family.

I hope this has helped you in some way. Feel free to contact me if you have any questions. :rolleyes:

PS, sorry for this also being so long. I seem to "ramble" on too or get into more detail than needed, lol.


Adrianne =)

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