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My Crazy Symptoms And My Small Wallet


IndiaEileen

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IndiaEileen Newbie

Hi there,

So, some advice from all across the board would be so appreciated.

Long story short, a few months ago I had a drastic work schedule change and I figured that eating my bowl of cow milk and Wheaties cereal at 2 am was just poor digestion. Well, it never went away, my symptoms of extreme gas, bloating and terrible stomach pains (keeping in mind at this point I was about to be diagnosed with Mono, I had frequent UTI's and some kidney pains every now and again, possible carpel tunnel and tendonitis in wrists AAND back pains).

I thought it might be a dairy thing cause I had major complications with that when I was little. I switched to Almond Milk over my cereal, in my Cream of Wheat (I know, brutal on the wheat!) but still felt terrible no matter how many cups of mint tea I drank!

I moved to Tacoma, got a job with a little better schedule but I was growing really curious about Gluten free. I made the switch after some research on my symptoms (also leaving out cow milk, just occasional ice cream and, yeah yikes, my same amount of cheese intake).

I felt better after a week! I felt a little more spry, dealt with some withdrawals that kicked my bum and now, two months later, I'm even going without my regular old wrist and back pains. I'm a grocery stocker so this was pleasant.

Ok, down to it, I got a nose bleed today when I came home early from work for extreme fatigue (an ongoing thing as of the last few weeks) and shortness of breath (another ongoing for a couple weeks).

I read about the whole Intestine disease thing, my inability to absorb nutrients as well, and noted the iron part as a concern of mine. I started taking a prenatal with iron and my B's and also a vit. D gummy. I got a nosebleed randomly today, small spurt, and I'm not going to lie I spent a good amount of time cradled in my man's arms.

I know seeing a doctor or nutritionist is ideal, I'm not a huge fan of Western medicine practices, but I'm still paying off other hospital bills. Any advice given will be rewarded with virtual hugs and gluten free Kinnikinnik Kinnitoos!

So, in a nutshell:

1) Might I have Celiaac Disease?

2) Might I have anemia?

3) Am I running the risk of low infertility?


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ravenwoodglass Mentor

Yes you could be celiac.

Yes that would cause your iron levels to be low.

Yes celiac can result in infertility.

Ideally you should be tested for celiac while you are still eating gluten. If you want testing then go back on gluten right away. There are plenty of folks that are self-diagnosed either because of false negatives on testing, because they went gluten free before testing and became too ill on the challenge to stay on it long enough for testing, couldn't afford testing etc.

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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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