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    Old 07-21-2006, 07:45 PM   #1
    ASDGRMama
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    celiac panel...

    I am being tested for celiac disease because I have Hashimoto's thyroiditis and they quite often occur together. I also have recurrent pregnancy loss which is listed on some sites as a potential result.

    I had the celiac panel done at Quest labs...is it likely that this will be accurate and sufficient to diagnose/rule out celiac disease.

    I know the "gold standard" to diagnose is the biopsy but is it worth going through if the antibodies are negative?

    My results won't be in for a few weeks.

    I was eating gluten-free for several weeks and felt much better physically but I went back to eating it when I knew I was going to have the testing done. I felt absolutely horrible! I was gassy, bloated and retaining fluid. After my blood draw I went back to eating gluten-free again (I also do not eat dairy, sugar and only limited amounts of meat). I've lost the 5 pounds I gained (I'm guessing in fluid) and am feeling much better overall; even my mood is better.

    I'm looking forward to seeing what my test results show. A positive result would answer a lot of questions concerning my health so I'm leaning in that direction as far as hoping goes .

    Does it sound like I had the right testing done?

    Thanks for your help!

    Kelly

     
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    Old 07-22-2006, 09:42 AM   #2
    elmhar
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    Re: celiac panel...

    Hi Kelly,

    Quest Labs in my region (may vary region to region) has 3 different celiac panels. Quest is a good lab. About the various tests that can be run, the IgG gliadin test (also called AGA) gives the most positive hits -- that is, many people carry antibodies to gliadin. However, +ve IgG does not give the highest correlation with the vili destruction of celiac disease. The one that does, the most specific test, is called the tTg, or tissue transglutaminase. When tTg is positive, it is quite likely that biopsy will also be positive for celiac disease. There are some other tests: EMA, ARA that have sort of intermediate sensitivity & predictability.

    Endoscopy w/biopsy is expensive, & depending on your insurance, blood test results may determine whether biopsy will be covered. Many HMOs run only tTg, and allow endoscopy only if that is positive.

    Endoscopy is called the gold standard because occasionally a person with negative serology has positive biopsy. Bloodwork is often "patchy," that is, some of the antibodies may be positive, others not. Rarely, you find someone with positives on serology, but negative biopsy (sometimes a result of faulty biopsying).

    IME, most doctors view celiac as a very black/white, yes/no disease. Your vili are gone, or not. In reality, most chronic diseases do not develop overnight. It's not a switch that gets thrown: yesterday normal, woke up this morning celiac. Vili destruction takes place over a period of months or years. Docs & labs vary in how they interpret early markers of gut destruction.

    As far as "going through it," upper endo itself is not too bad of a procedure. A little more so for young kids, but most adults sail through it. You're put out, it takes about 20 min., an hr. or so in recovery, then you're home to sleep off the meds & wake up the next morning ready to roll.

    It does sound like you had a positive response to GF diet. People vary in how much information & validation they need in order to make such a major change permanent. If your bloodwork &/or biopsies come back negative, it's possible you may have a preceliac condition.

    Although this is not yet part of standard gastro clinical toolbox, a well- credentialed gastro in Dallas, Kenneth Fine MD, who has found evidence of the tTg antibodies (highly specific for autoimmune destruction of the gut) to be shed in stool for years before they are found in serum. Many people with negative serology have found validation & benefit from Dr. Fine's work. However, it's not likely to be covered by insurance for a while yet. One motre thing to put on the list to research, if you're interested.

    And then there are people with absolutely no antibodies to gluten, anywhere, who nonetheless respond to GF diet. It's not completely understood why, but the fact that gluten is one of the most difficult food proteins for the body to digest, as well as the relatively high incidence of the phenom. known as "leaky gut," may play a role.

    I hope your test results give you some info to help solve your health mysteries. Let us know what you find out.

    Best wishes.

    Last edited by elmhar; 07-22-2006 at 09:43 AM.

     
    Old 07-24-2006, 10:27 PM   #3
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    Re: celiac panel...

    Thanks for the reply Elmhar! They said that the panel included:

    Tissue Transglutaminase (tTG) Antibody, IgA

    Gliadin Antibody, IgA

    Total IgA

    Endomysial Antibody (EMA) Screen, IgA- performed when the anti-tTG IgA is positive

    EMA Titer-performed when the EMA screen is positive

    tTG Antibody, IgG-performed when total IgA is low


    I greatly appreciate all the information! I'm hoping to get some results after this week (dr is out of town).

    Kelly

     
    Old 07-25-2006, 07:40 AM   #4
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    Re: celiac panel...

    Sounds like a good panel, Kelly. Hope you get info that helps.

     
    Old 07-25-2006, 12:53 PM   #5
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    Re: celiac panel...

    Hope you don't mind me adding my two cents but my 3 year old has been sick since birth and has had all the blood work as well as the biopsy and all came back false-negative. Children are the hardest to diagnose. My suggestion is to look for other celiac symptom information and testing. The other poster was right about Dr. Fine, I just sent off some DNA samples of my son to his lab to be tested. Should have the results next week. Didn't do the fecal testing. There is so much information out there. Best of luck to you.

    Becky

     
    Old 08-06-2006, 09:02 PM   #6
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    Re: celiac panel...

    My results are in so I thought I'd post them:

    Tissue Transglutaminase Antibody, IGA- <3
    Range: <5 negative
    5-8 equivocal
    >8 positive

    Immunoglobulin A- 344 Range: 81-463 MG/DL

    Gliadin Antibody (IGA)- 4
    Range: <11 Negative
    11-17 Equivocal
    >17 Positive


    So anyway, everything came back in range. In a way I'm relieved but in a way I'm disappointed . I'd like answers and it's discouraging to not have them yet it's a blessing to know I can consume gluten and not have to worry that my small intestine is being damaged.

    I doubt I will pursue it further. I do feel that what I eat affects my condition though. Particularly sugar, caffeine and dairy. Seems to increase my pain and stiffness.

    Thank you for all of your help!

    Love and Prayers, Kelly

     
    Old 08-07-2006, 09:13 AM   #7
    elmhar
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    Re: celiac panel...

    I'm glad that your celiac panel came back OK, Kelly.

    Do bear in mind that there are many more people w/nonceliac gluten sensitivity than with celiac disease. We are the ones who respond positively to GF diet despite normal test results. While many people need medical validation to make the extreme lifestyle changes a GF diet entails, some of us find that pain reduction alone is motivation enough.

    Each of us is highly individual. I'm glad you've discovered that sugar, caffeine & dairy are problems for you. I also find that more than a smidge of sugar flares my fibro. Ditto for vegetable oils, fluoride & chlorine. Eliminating gluten cured my life-long IBS, but didn't touch my fibro. Go figure.

    Best wishes.

     
    Old 08-07-2006, 11:32 AM   #8
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    Re: celiac panel...

    What is a gluten free diet? I have cut out all bread as I was having a lot of lower abdominal/pelvic pain and it seems to have helped. How much farther is there for a gluten free diet and what DO you eat? Thanks, Kerri

     
    Old 08-07-2006, 02:18 PM   #9
    elmhar
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    Re: celiac panel...

    Hi Kerri,

    A GF diet means eliminating all sources of wheat, barley, rye from the diet. These 3 grains, and their ancestral predecessors like spelt & kamut, all contain the protein gliadin, commonly known as gluten. Oats are also traditionally removed from a GF diet, because conventionally produced oats contain gluten by cross-contamination w/wheat & barley crops in growing, harvesting, storage, milling, etc.

    Beyond removing the obvious bread, pasta, crackers, cookies, & cakes, a GF diet means pretty much shopping "the fringes" of conventional grocery stores -- going for plain, unprocessed, unseasoned fruits, veg, meat/fish/poultry, & dairy. In specialty food sections & at health food stores, there are gluten-free breads, pastas, cold cereals, junk, etc. available.

    Gluten is present in many processed foods, as wheat flour or starch. It is present in barley malt, so beer (unless GF beer) & other barley malt containing foods are off limits. Rye on the surface seems to be the least problematic, until you scratch that surface & discover that rye-derived natural flavorings are very commonly used in processed foods like lunch meat. Gluten can also be present in medications, in health & beauty aids, in art supplies, and in construction materials.

    People with celiac disease need to undertake a scrupulous GF diet down to the microscopic, not-a-crumb level for life, in order to avoid extremely serious health problems.

    BUT, not everyone with gluten intolerance is celiac. Some people have outright allergies -- perhaps only to wheat, or perhaps to all 3 gluten-bearing grains. Other folks have no "positive test result" basis for a GF diet at all, other than it makes them feel better.

    There are other food intolerances that can contribute to IBS/gut pain. Among those is sensitivity to yeast. Some people who start out eliminating bread & feel better think it's a wheat or gluten problem -- but it could be the yeast.

    If one seems to be gluten-intolerant, it's good to get celiac ruled out, as there are other health aspects that need to be followed w/celiac. And, people who might be celiac but don't get tested, sometimes cheat on the diet, which is very bad for celiacs.

    If you are interested in learning more, I highly recommend the book, Living Gluten-Free For Dummies, by Danna Korn. Your local public library may have a copy.

    Best wishes.

     
    Old 08-08-2006, 04:38 AM   #10
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    Question...

    FAO ADSGRMama

    ''I am being tested for celiac disease because I have Hashimoto's thyroiditis and they quite often occur together. I also have recurrent pregnancy loss which is listed on some sites as a potential result.''

    Can I just ask, what is Hashimoto's thyroiditis?? I am a diagnosed Coeliac and have just experienced a m/c this past June... was wondering if this other condition is something I should be aware of? When you say ''recurrent pregnancy loss is listed on some sites as a potential result'', did you mean as a result of Coeliacs Disease, Hashimoto's or a combination of two together? Would appreciate your input. Thanks.

    **** Something has just struck a cord with me about this due to an earlier question I posted and reply I recieved regarding my eyelashes falling out. (Click on my name, click find all posts and you will see the question and answer there - title 'Eyelashes falling out') The girl who replied said she thought it could be Hypothyroidism - is this a similar/same condition as Hashimoto's and would the eyelash thing be an indicatior that I could have this???? Things seem to be falling into place as I type...

    Last edited by Kathp; 08-08-2006 at 04:52 AM.

     
    Old 08-08-2006, 04:44 AM   #11
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    Re: celiac panel...

    i am trying to eat no wheat for a while due to lower abdominal/pelvic pain that nobody can find the reason for. What are some good sources of fiber that I should be eating? I was eating ALOT of bread with ALOT of fiber. (double fiber bread, 5 grams per serving). I now eat some oats, fruits and broccoli. What should I add to my diet? Thanks so much for the help! I dont know why the lower left area is the only place that would hurt if it is my bowels though...thanks again!

     
    Old 08-08-2006, 10:24 AM   #12
    elmhar
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    Re: celiac panel...

    Hi Kerri,

    Legumes & whole fruits are great sources of fiber. As is most any whole grain -- try brown rice. Some people are fans of flax seed, or ground flax seed, sprinkled on cereal. At a health food store, you can find whole grains like quinoa, amaranth, and teff, that can be cooked or made into a pilaf, and these are quite high in fiber.

    A recent introduction of a native American grain (Indian Rice Grass) called Montina adds exciting fiber potential for those on wheat-free/gluten-free diets. Montina flour contains 24 grams of insoluble fiber (similar to wheat bran) in 2/3 cup of product.

    There are various fiber supplements, like Metamucil (psyllium) that can be helpful. Some people build up to a using a small serving several times per day. You will want to read labels carefully, as some of the newest fiber supplements are wheat-based.

    Best wishes.

     
    Old 08-08-2006, 10:32 AM   #13
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    Re: celiac panel...

    thank you for your help and advice!!! It is greatly appreciated as this is all new to me and i am doing it on my own!

    Keri

     
    Old 08-08-2006, 07:57 PM   #14
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    Question Re: celiac panel...

    Hi elmhar!

    I too am Kelly and sound just like to first Kelly who posted on this thread. I too was recently diagnosed with Hypothyroidism and am having a slew of symptoms (no miscarriages to date) but acne rosecea, GERD, sleep apnea to name a few.

    Here's my deal.....

    I have had Fibromyalgia for 12 years. Real debilitating for the first few. After I had my children, it became less severe and Chiropractic always seemed to help. Then last year, boom, major remission, was tested for lupus and Rhuemetoid and both were ruled out. With some research, I came across Celiac Disease. As I read the classic symptoms, I did not appear to have any current classic symptoms but noticed one classic symptom in children was failure to thrive. Knowing my mom always mentioned I was a failure to thrive baby, AND was on a restricted diet for 2 years (no cookies or milk etc....) just soy milk and baby food. I was only 8 lbs at 6 months and 14 lbs at a year.

    I decided to call my mom and ask her if she knew what Celiac was and she said "yes, you had that as a baby"..... Great!!!!!! I thought, now you tell me.

    I cut out gluten, felt great 10 days later! Had my doctor run blood work, came back normal. Started eating wheat again, had a biopsy anyway, came back normal, no celiac. Even though the GI said if you had it as a baby, you have it. He then ruled it out.

    Just as you said........ I started to cheat, though I do make great effort to avoid gluten. When I do eat it, I get periperphal neropathy the next morning and fatigue.

    Now, my doctor said Hypothyroidism, so I'm on Armour Thyroid and I have Gerd, sleep apnea, restless leg syndrome, peripheral neuropathy and acne rosacea.....

    Just got another celiac panel done, and it's normal. I feel like I'm going crazy. My mom, incidently, just in the past 3 years in her late 50's began to get the same list of problems I have only she additionally has diabetes and high blood pressure. I think she has Celiac too. I just adds up. BUT WHY DON"T THE TESTS???????? I am frustrated and confused at all the road blocks but all the dots point to Celiac. What else can I do?????

    How can I get a stool test done for tTg? even if I have to pay for it?

    Thanks. Your insight would be helpful because I can't seem get anyone (family, friends, doctors) to believe me that I have Celiac, but I am convinced I do and for certain did as a baby. and If I do have it, then I need to see about my kids.

    simplykel

     
    Old 08-09-2006, 05:42 AM   #15
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    Re: celiac panel...

    KathP,

    I'm so sorry to hear about your loss...it can be very difficult and the answers as to why are often elusive.

    Hashimoto's Thyroiditis is autoimmune hypothyroidism (although I swing between hyperthyroid and hypothyroid...seems to be somewhat characteristic of the disease in it's early phase).

    Celiac is linked to recurrent pregnancy loss. The tests are conflicting regarding hashimoto's and a higher incidence of miscarriage; although I could have children just fine before I had hashi's (I had 5 healthy children with two random miscarriages inbetween and then suddenly I had 5 losses in a row; two were second trimester miscarriages...obviously something has changed...I'm only 29).

    Hair fall-out of any kind should make a dr suspicious of thyroid disease. I would recommend that you have your TSH, Free T4 and antibody levels (the antibodies are: Tg, TSI and TPO) tested.

    My TSH came back "in range" but my antibodies were very high so the antibody testing is very important. Many drs won't run them if the TSH is "in range" but it's worth pushing for.

    Having celiac disease is an indication to be tested for Hashimoto's even in the absence of symptoms (based on my own Internet research).

    simplykel,

    I'm so sorry to hear about your frustrating journey; I'm on one too! It gets maddening after a while. It's so hard to talk with drs who have absolutely no frame of reference for how you feel. My dr said I'm "way too healthy" to be in his office . I told him that I wish I felt that way!

    I think that if you feel you are celiac and eating gluten-free helps your condition then avoid gluten. I know it's so much easier to commit with an official diagnosis and I realize how much it means to have that medical confirmation but if I've learned anything over the last few years it's that medical science not only doesn't have all the answers, they actually have very few of the answers.

    The body is so complex and the reason they keep coming up with new testing for "old" conditions is because they know their testing is not perfect.

    Quite often it's alternative medicine drs that help the most. It's not easy and insurance doesn't always cover it but finding a Naturopathic MD might help a great deal. At this point we simply can't afford it but maybe soon.

    I also feel chiropractic has helped and always suggest it to people .

    Love and Prayers, Kelly

     
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