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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com 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 Celiac.com Store.

Celiac?
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4 posts in this topic

Hello....

I guess I am just rather anxious and would like the opinion of others...

To start off - I had the Celiac Blood Test done and my IgA, IgG and my Tissue Transglutaminase IgA came back negative....

My FERRITIN (IRON) was pretty low at 8 (range is 10-291 ug/L)

Roughly two months ago I started getting realllly smelly flatulence followed by visually noticable abdominal bloating, constipation and restlessness (If felt like I was awake most of the night).

I've never had a problem with any of this before. I eat a VERY healthy diet and go to the gym 5/6 times a week. I thought maybe I was eating two much fiber and cut back my bran/flax breakfast and vegetable/fruit intake.

Didnt help. My family was getting prettty grossed out to say the least with how bad my gas smelt. It is/was soooooooooo embarassing.

I went to the walk in clinic and they suggested milk of magnesia... well we know what that does. It releave the bloating for a few days.

My parents went on vacation, I was in a rush so I made a tuna caserole and frozen lasanga for my sisters (which I ate for dinner two nights in a row - *Note - I rarely eat any form of white flour pasta/bread etc)... I swelled up like a balloon... My Parents came home, saw how sick I was and made me a doctors apt. We then started self diagnosing. My Aunt and Grandmother (on my moms side) both are Celiac. I started consuming wheat like a mad women knowing I was going to ask my doctor for a blood test. I was horribly dizzy, bloated, constipated,awful cramps, my brain was a complete fog, it felt like my lungs were heavy/tired???

I know I stress out wayy to quickly, I sufffer from axiety and irritablity all the time. I have psoriasis on my elbows, I had hypoglocemic as a kid...

Its two months before I can see a G.I.

I've been gluten free since Saturday and lactose free for 2 days (today is day 5)and my bowels have started moving, my head is much clearer, I still have gas and bad cramps...

SHOULD I TRY A GLUTEN FREE DIET OR WAIT TO SEE A G.I AT THE END OF APRIL????

Its soooooooooo expensive eating gluten free... What if I just have IBS

ANY Suggestions would be soooooooooo appreciated.

Thanks in advance

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You have to eat gluten to go through testing.

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If you are wanting any testing, blood work, biopsy or both you need to be on a full gluten diet. I personally believe it is better to stay on gluten and get the testing out of the way first. If you go off gluten now and want to testing later you would have to go on a gluten challenge for appx. 3 months consuming 3-4 slices of bread or equivilent/day. For some people the challenge is just to bad for them and they can't continue or it isn't enough time to give postitive test results. This happened with my youngest son who had positive blood work. We took him off gluten without the biopsy and tried later to put him back on. He couldn't tolerate it. He still has a celiac diagnosis without it because of his symptoms, positive bloodwork, improvements seen on a gluten free diet, return of symptoms back on gluten and my celiac diagnosis. Even if you have testing done and it is negative(a lot of false negatives) at least you had it done before gluten free(the best chance for accurate testing) and go from there. Of course since you correlate your symptoms with gluten consumption, it is worth a trial of gluten free even if you test negative. Since you have a family history, your chances of having it to go up considerably.

Call the GI's office and ask to be put on a waiting list. What a lot of doctor's offices will do is call you if there is a cancellation and you could get seen earlier.

If you decide to go here are a list of the tests you need to have done.

1. total IgA

2. IgA/IgG tTg(tissue transglutaminase antibody)

3. IgA/IgG DGP(deamidated gliadin peptide) This is the newest test

4. IgA/IgG AGA(antigliadin antibody)

Also don't settle for a diagnosis of IBS. A lot of folks on here were diagnosed with IBS for years just to find out they had celiac. It is often referred on here as "I Be Stumped" because, IMHO, it is just a catch all crap diagnosis for when the doctors don't know what is wrong. Of course the bowel is irritated, but why?? IBS diagnosis doesn't give you the "WHY."

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Thanks for your comments! I'm going to continue with my gluten/lactose free diet for a couple weeks. I'm already seeing a difference in my bloating/cramps and general disposition... Gas is still active.... Today I am cutting out peanut butter, apples and pears. In 2 weeks i'll start adding things back in, starting with gluten. I won't be seeing the G.I until the end of April... I know I want to be actively consuming gluten products when I go see him and ask for a biopsy... Which I'm sure won't be for a few weeks after that.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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