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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About RNRN

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  • Gender Female
  • Interests Family, Health, Wellness, Cooking, My dog and the great outdoors.
  • Location Pennsylvania
  1. I did have high Iron- ever so slightly, but high. I do eat a lot of red meat (going to cut down now) but b12 is water soluble and should NEVER be high?  I thought hemachromatosis too, but my Folate and TIBC were normal. Heading back to the docs again in a few weeks... sigh. 
  2. Hi Everyone-  I went to my doctor recently and had my second Celiac blood test. I have been gluten free for about 9 months now. My first test was "inconclusive" because of a low IgA. My second test is negative- but again, Im gluten free now.   My doctor does not want me to have to eat gluten again for a months, so he suggested ELISA/ACT Lymphocyte reactivity testing. Has anyone ever heard of this? Its a blood test that tests my white blood cells reactivity to MANY foods and chemical additivies- gluten /wheat being one of them.    The test is fairly easy, though I have to go off all antihistamines for 4 days, and for 2 days, I have to consume/use NO chemicals- so no body lotion, hair conditioner, make up, etc. The test also is not covered by insurance, so there is a cost I have to consider.  Wondering if anyone had heard of this kind of testing, or better yet had any experience with it? I really do want a true diagnosis as I am getting married soon, and we are talking about children and I want to know what Im dealing with before I go down that road. But.... Im pretty convinced be it celiac or intolerance, my body doesnt like  gluten - so I dont want to have to eat it to find out!!   Thanks !! RNRN 
  3. I agree- Vitamin D has a large "normal" range- 35-100.  My doctor agrees that higher normal levels, 70-99, provide more cold and flu protection. Here on the East Coast its getting to be  vitamin D season- the days are short and my doctor wants me to increase my 2500u/day! It looks like your in Cali- you could either supplement her D and go back to your doctor for another level in 2 months, or you could make sure she gets 20 minutes of "sun time" a day- no sunscreen- if she's not so fair that she burns!  Good luck!
  4. It has been awhile since I have responded- and I wanted to say that I did get a chance to read your posts before I went to my  doctor and they were very helpful- Thank you so much! Unfortunatly, despite ALL of the information, and my wonderful PCP, Im still in a state of confusion. Sigh. I see that many people get this way before/during diagnosis, and I cant imagine not having the medical knowledge that I do and trying to navigate the system. So, My doctor did re-test me. This time, he did do more blood work- TTG, Reticulin IgA, Endosomal IgA, and Gliadin IgA and IgG.  I have, however, been gluten free for some time. (I ate a little gluten the day before, then read that you probably have to eat gluten for weeks before, and gave up. I didnt really have any symptoms, so I did not expect a result.)  Interstingly enough- this time my tests were a definitive Negative and NOT inconclusive. So- Im thinking- Maybe I am gluten intolerant and because of my low IgA, "inconclusive" is as positive as my bloodwork will get? Just a thought. My doctor agrees that its possible that I was gluten intolerant while pregnant and exacerbated it by eating crackers for nausea... so that  he said we'll just have to wait and see. I discussed with him going to another GI, but he agreed that eating gluten for a month was not a great idea. My doctor reccomended another test- Elisa/ACT Lymphocyte reactivity test. The test is a blood draw (although complicated- you cant take antihistamines, or certain other medications, for 4 days prior, and the day prior, you can not use ANY lotions/conditioners or other beauty products. It makes sense: He thinks if my immune system is busy fighting something else (Like gluten, or another food or chemical addititive that I am intolerant to,) Then its not going to work properly when asked to do other tasts (Like the inconclusive TB test I had, the inconclusive Celiac test, or my frequent although short upper respiratory infections.)  Has anyone else heard of this kind of testing? I forget the name of the company- I have it at home. Im debating doing it,  but it is a bit costly and insurance of course does not cover it.  Alll of my other bloodwork- Antinuclear antibodies, Cardio-CRP, Non-Cardiac CRP, was really good this time around. (Including my triglycerides,  which have been high my whole life because I have genetic high cholesterol. Very exciting to be in normal range!)  My doctor and I did go back and review my IgA levels over the years, 50s, 60s, 70s, so apparently I have been low for a very long time.    The only tests I had this time around that were abnormal were a HIGH B12 level and a HIGH iron level?! Bizzarre, huh? I Know Celiac causes  malabsorption issues, but usually low levels, not high? OR can you absorb too much? My vitamin D levels are still low, and I take 2500u/Day!  I freaked out about this high iron/B12 at first- usually only seen in advanced liver disease or leukemia- but my liver numbers are fine and my White blood cells are fine. I stopped taking vitamins, and I will go back for recheck of levels in a month.    I do like the idea of seeing an Immunologist for that reason- and Im hoping I can find one that is used to taking care of people with Celiac,  as LauraTX mentioned. So, Im looking into that as well.  In the meantime, with the absence of gluten, I do not have ANY stomach issues or diarrhea! I still have some joint pain, which feels like nerve pain, burning/aching down my arms. Its better than it was when i ate gluten, but its not totally gone. My lymph nodes still swell now and again too.    One day I will figure myself out!! Thank you all, again, for your words of wisdom and support. I am going to re-examine my diet and make sure no gluten is hidden anywhere. Thank goodness there isnt any in my thyroid pills- but I have to look at other vitamins and sauces and such.  Rachel       
  5. Hello.    I am hoping to find (if nothing else!) some peace of mind here. I am a 33yo female with a history of hypothyroidism (x 10 years now.) Ever since my thyroid went bad, I've had some weird on and off chronic symptoms (mostly joint and muscle pain, indigestion and thinning hair) that have not been able to be explained, but also have only slightly improved since going on thyroid medication. Luckily, I have a great PCP and I am a nurse myself so I am confident Im on the right thyroid medication and its working for me. However over the past year, some other lovely symptoms have developed. The most irritating symptom is skin rashes- a mix between excema and possibly some dermatitis herpetaformis. Problem is, the dermatitis lesions are usually in my scalp, and of course NEVER around when I go see my doc or the derm, so I am self diagnosing. But although the break outs are infrequent, Im pretty sure they are DH and nothing else! The excema is constant, it never goes away now. The muscle pain, which had improved some a few years ago, is now back, and I have random swelling of my lymph nodes in my neck. The worst symptom which had recently developed was horrible diarrhea- ONLY at night (middle of the night, usually) with horrible stomach pain. The diarrhea was watery, sometimes oily, and only at night. After lots of trial and error (and googling!) I thought hey- Maybe this is a gluten issue. So I went to my doctor. My TTG/EMA were negative, however my IgA was low. Not horribly low- just about 10 points below normal. So my smart doctor reccomended a scope (colonoscopy or endo- not sure.) So  I went to a GI guy. He was - well not great. I had randomly had a cat scan of my abdomen maybe 3 months before my visit, so he said, if my cat scan is negative, chances are nothing is wrong with my gut. Im probably just horribly constipated and thats why I get diarrhea at night!!?? He put me on massive amounts of fiber (um, hello, ask me about my diet- I eat tons of greens and fruit daily!) and then wanted me to do a big clean out (A FIVE DAY PREP) for a colonocopy. It never happened, because the meds he gave me for the prep had fake sweetners in them- I have been allergic to nutra sweet for as long as I can remember. (I told him that, too.)  So, the scope was never done, and I've never gone back to that GI. I tried an elimination diet and was pretty sure it was the darn gluten. (sniff, tear, no more pasta for this italian girl.) I've been gluten free for about 4 months now. NO diarrhea at all. No belly pain at all. Joint pain is better. Havent had a DH lesion in awhile, though my excema is the same.  So I am due to return to my primary doc this monday and I want to get tested again. However ,Im gluten free now, and the thought of eating gluten for WEEKS or MONTHS sounds so painful to me! I know- if you know your intolerant, why get tested? Just eat gluten free! Well, as a nurse I know that the immune response that comes with Celiac disease can be very dangerous. So,  I would like to know how careful I need to be. I rarely go out to eat ,but when I do, I have not been asking about sauces/dressings. (I dont eat pasta or bread or breaded stuff, of course.) So - do I need to be that careful? Also, this May, I am getting married! We have talked about starting a family soon. For pregnancy- is it dangerous to not know your diagnosis? Can it make morning sickness/nausea/constipation while pregnant worse? Because Im concerned about all of that- I have family members with a history of hyperemsis- or not keeping anything down while pregnant. Would genetic testing be enough (so I can stay on my diet) and if so, how can I get that done?  Of course, Im going to ask my doctor all these questions- but I thought I'd find some help (or peace of mind) in the experience others have had. I am new to this site, but it seems as though there is a wealth of information. Thanks everyone, and havea  great weekend.  RNRN