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Mrs. M.

Member Since 20 Feb 2012
Offline Last Active Oct 23 2012 04:09 PM
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Topics I've Started

Doctor Questioning My Diagnosis Of Celiac

22 October 2012 - 04:37 PM

In February of this year I was "diagnosed" with Celiac disease based on a positive ttG IgG. My doctor said this result was enough to make her convinced I had celiac disease and she said I should start on a gluten-free diet, which I did. I have been following a gluten-free diet for the past 8 months, and have not intentionally eaten any gluten, although I suspect that some has snuck in here and there when I am not aware. My symptoms were never extreme. The reason I was initially tested was that I was having inflammation of muscles in my leg, and my chiropractor recommended that I be tested. I do have stomach issues (have lived with these for years) and migraines, and various other stuff that can all be part of celiac. But nothing delibilitating. Of course, now that I am aware of celiac disease, I have been reading gluten-free cookbooks and other sources and feel like living a gluten-free life is the right path for me. I also know that many people with celiac disease don't tolerate dairy or other types of foods.
Recently I asked my doctor for a referral to a nutritionist to see whether I could improve my diet further and find out whether other foods were causing me to have stomach cramping, bloating, etc. She surprised me by saying "you should have an endoscopy to find out whether you have celiac disease". This is a huge surprise to me, since I've been going under the assumption that I DO have celiac, since this is what she told me 8 months ago.
I have requested a consultation with a GI doc to review my history before I undergo an invasive and possibly unnecessary procedure. I would love to have feedback from this group on any questions I should be asking. I have some already:
-In order for the endoscopy to be meaningful, wouldn't I have to start eating gluten again? for how long?
-Is it normal for someone with celiac to still experience some GI discomfort like bloating, cramping, even when on a gluten-free diet? (I have no idea what a "normal" stomach feels like)
-How do people figure out whether they have intolerance to dairy/corn/other foods besides gluten?
-Should I have more blood screening? What about genetic testing?
(I am also concerned about my kids, who are 5 and 8 years old, especially the 8-year old, who had chronic stomach aches and a rash on her elbows and knees until she stopped eating gluten.)

Basically, I feel like I have so much evidence that I have celiac disease, but I don't know whether I am just looking for pieces to fall into place. Any advice/comments welcome!!!

Genetic Testing-Laboratory Recommendations?

19 April 2012 - 07:46 PM

I am looking for recommendations for laboratories that do diagnostic genetic testing for celiac disease. My doctor says I have celiac disease based on a (slightly) high TTG-IgG. I have been gluten-free for a couple months and feeling a little better but never had severe symptoms.

I am interested in genetic testing for two reasons: (1) to lend support to or to rule out my diagnosis of celiac disease, and (2) I want genetic testing for my kids, assuming I have the Celiac-predisposing genes.

My health care providers do not seem to be very well-informed about Celiac disease. At least they have a very different approach than what I read about in this forum and in all the many celiac books I've been reading. No one seems inclined to do more testing on me, especially not genetic testing since it is expensive. I would be interested in paying for it if I can find a lab that offers it for a reasonable price. The one quote I have so far is $400 per person which is too much since I have several kids who would need to be tested. The other caveat is I want the option of cheek swab/saliva testing since my kids will not want blood draws.

So, if anyone has experience with genetic testing, and lab recommendations, please send them my way--thanks!!
by the way, I understand that the genetic testing doesn't tell everything. But I think it would be helpful information for me.

How Long After Eating Gluten Do Symptoms Appear?

16 April 2012 - 09:01 AM

Hi-
I am relatively new to the world of celiac disease (diagnosed 2 months ago and following gluten-free diet since then). Yesterday I had significant stomach cramping starting in the early afternoon and I am trying to figure out what I ate that caused the problem. I think all of my food yesterday was safe, so I am wondering whether this could have been a reaction to something I ate the night before (restaurant food that I'm not sure about). How long after eating a gluten-containing food does it take before you feel symptoms? Can it be immediate? Or can it take as long as 12 hours? Thanks for feedback!
And, the food I'm questioning is El Torito veggie fajitas. Does anyone happen to know whether these contain gluten?

thanks!!

Should I Be Concerned About Dairy Intolerance?

03 April 2012 - 08:44 PM

I have been following a gluten-free diet for about 6 weeks, after learning that I have (mild) celiac disease. Right away after starting the diet, I felt much better (no bloating/discomfort after eating). But lately I feel like I have more bloating again--hard to tell whether it is as much as before, and it comes and goes. I never had severe digestive symptoms, so it is hard to quantify. My question is whether I should try eliminating other foods from my diet. I have been told that many people with celiac disease have trouble digesting other foods like dairy products. I don't drink milk any more, but I do cook with butter and dairy products. I don't want to give up all these foods if I don't need to. I would like to hear other people's experiences and advice: is testing typically done for other food allergies, or do people just figure out what works and doesn't work by trying to eliminate foods from their diets?

Raynaud's Symptoms Feel Worse Since Starting gluten-free Diet

13 March 2012 - 08:04 PM

I started on a gluten-free diet last month, after being diagnosed with celiac disease. I have had Raynaud's syndrome for years. I know the two can be connected, but I am surprised (not happily) that my Raynaud's symptoms seem much worse ever since I started the gluten-free diet. I know it is winter but our weather is very mild. I am now getting white fingertips many times a day, usually when I am preparing food or after I have eaten. Maybe it is just that I am cooking a lot more food from scratch, washing fruit and veggies, etc. But I'm curious about whether there could be any medical explanation for this.

thanks!