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Ask the Doc: Are there different levels of celiac disease?

Posted on August 5th, 2010 by Alison Read 3 Comments - Add Your Own »

questionmarkgreen1.jpg Q. I was just recently diagnosed with celiac disease after a positive biopsy last week.  I don’t get real sick, other than bloating and gassy.  Those were my only symptoms.  My question is, are there different levels of celiac disease?  If I go to a restaurant and ask for gluten free foods, but they happen to get cross contaminated with something containing wheat, rye or barley, am I at that serious of a risk by dining there since I don’t get the diarrhea and vomiting, etc.?  It’s been real hard on my family and me trying to dine out at a restaurant who has a true understanding of celiac sprue.

A. Ask your doctor to obtain the Marsh classification of your biopsy. The higher the class, the longer it will take to heal on a gluten-free diet. Symptoms often do not correlate with the level of biopsy abnormality.  Those who have been diagnosed with celiac and have their biopsies return to normal — Marsh 0 — will develop damage after being exposed to 7 grams of gluten, or about the amount in a slice of bread. I hope this helps.

Health and happiness,
Dr. Aron

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  1. Dr. Aron,
    Diagnosed celiac disease three months ago by GI doc, she said no need for biopsy, I definitely have it. Been to numerous docs for six years with celiac symptoms and low left side pain that radiates to groin. This left side pain seems to come with my cycle like at ovulation, its an achey, burning, stinging feeling that last a few days then goes away only to return next month. I am 50 and perimenapausal. Noone can tell me what this left side pain is though started with celiac symptoms, any ideas? Colonoscopy was good. Thank you!

  2. HELP!!!! I went to my doctor for choking and swallowing problems. I had an endoscope, biopsy and called back for more lab work. My TTG-IGA test came back as well as my biopsy for Celiac Sprue, to the extreme. My ttg and iga level was 172.6. My specialist said I have probably had this since I was 15 and I am now 44. I am currently waiting to have an appintment set up to see a neurologist. I am petite 5 foot with weight changing from 109 up to 142, I didn’t even weight that much during my pregnancies. I have been taking Gabapentin for neuropathy a little over a year now. I have always been anemic and bruise easily. I get tongue tied easily or just go completely blank and totally loose train of thought, as far as too, looking through my make up case while getting ready for something and seriously a few seconds pass as I keep searching but realize, I have forgotten was I was looking for just seconds before. I have always been considered clumsy from what I hear but it seems to be getting worse, I have fallen 3 times in 2 weeks and one of those falls left me with a small crack in my tailbone, so now more aggitation. My back is either in spasms around neck and shoulders to aching down the spine and most definitely lower back. I have the migraines, had them since I was in High School, no one knew why, now I guess we do know. I have had tingling, swelling, in both hands, pure numbness in tip of index fingers. I have weakness in my left arm that comes and goes, it’s pretty bad when it returns. I have just in last week, started feeling sensations of immense heat but only in my legs.

    I could go on and on, I am completely overwhelmmed with the Celia diagnosis and a total change of life style. I am from a small town in Arkansas, I drive up to Little Rock to get most of my groceries there but once I was patted on the shoulder by my Gastrologist and said totally gluten free diet, make-up products, soaps, shampoo….etc

    His nurse has been with him for 5 years and stated that I was maybe, only the 2nd one she has seen diagnosed with this auto-immune disease. I was told that the internet will be my best friend. The doctor said eating gluten free might not do the trick alone. I seriously have no clue how to eat right everyday and so forth, all I have done for last 3 months is just make sure I go down the gluten aisle at the grocery store but yet, I dont cook for myself alone. My husband and stepson love big meals so I usually cook their dinner and then grab a bite of something from my side of the cabinet.

    When I was about 30, I had a small seizure that let to some testing. At one point they claimed I had sleep epilepsy. Through all this testing not a whole lot was done to help because they did discover I did not not have a right carotid artery, therefore that became the study. I haven”t really had a seizure like that in many many years. I wonder sometimes, if I am having little partial seizures when I have a blank moment or a few spasms and I knida lose myself.

    Wow, this is way more than I wanted to say and I very much apologize. I would just like to answers and maybe even an outline of how to live with Celiac. My small town and the small town I drive too evidently do not know how to treat someone with this disease or how to help them get on the rght track.

    Thank you very much,

    Stacey

  3. Stacey,
    I am sorry to hear what you are going through. It can be so overwhelming at first. From the sound of all your symptoms, you absolutely need to be gluten-free and you will feel better when you get it out of your system. You will get the hang of it! And you will even be able to cook gluten-free meals that your whole family can enjoy. There is so much to tell you. Hopefully you have done some research by now. This website is a good resource not only for the information but for the conversation. Please email me with any questions you have!
    Alison

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