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Npealer

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Npealer Rookie

Hi All,

I hope someone can point me in the right direction or has had some similar symptoms. I was diagnosed with Celiac Disease in Feb 2011 and I have been on a gluten-free diet ever since. I am still having problems and I am not really sure if they are all related to my celiac disease or maybe something more. In the past 6 months I have had to consistently deal with Insomnia, headaches, dry skin, hair loss, muscle aches, occasional numbness in my fingers, shortness of breath and slight weight gain (5lbs) <-- I know not much but still, dry eyes, and wierdly enough it seems like my skin is thinning. I feel like the smallest thing will leave me scratch that takes forever to heal (like an older person). I'm only 33 yo and I am tired of feeling like crap even afer be gluten-free. Anybody go thru something similar? I have an email out to my doc to see about all these symptoms I have been experiencing. She diagnosed my celiac disease relatively quickly so I can only hope she will continue to be agressive in treating me. Thanks in advance


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GlutenDude Newbie

I know this is the last thing you want to hear...but you have to be patient. It took me a few years to start feeling better and five years later, still struggle. And I am as careful as they come. I would get another endoscopy and see if your intestines have healed at all.

Good luck and keep us posted.

Gluten Dude

missmellie Newbie

Hi! Has your thyroid been tested? Having a problem with thyroid is pretty common with celiac and several of your symptoms could be related to underactive thyroid. I have to agree with Gluten Dude about being patient. We all WANT to heal quickly, but our bodies don't always do what we want, do they? Also, it's possible that your gluten sensitivity has caused other problems to arise. Over time, untreated gluten sensitivity can make someone become intolerant to dairy and soy and other things as well. At least, that's what my doctor told me and it's certainly true in my case.

AVR1962 Collaborator

It is a good idea to have the thyroid checked and if that is not the problem look at supplements. Your body might not be getting all the nutrients it needs to feel better. Insomnia is a real good indicator that your body needs something more. Due to the hair issues, again do get the thyroid checked because hair loss in one symtom, you could benefit from BioSil drops, zinc and/or Primrose oil. Healing issues- take a look at zinc and look up vit K to see if that fits you. Numbness in the fingers, if not thyroid, could be B12. Fatigue could be iron, d or magnesium or all 3. Muscle aches, depends on whaty you are dealing with.....spasms- magnesium and potassium; hard muscles like you ahve just ran- Omega 3,6,9. All of these vits are common for Celiacs to have trouble with.

dilettantesteph Collaborator

I am a super sensitive celiac. I had to go on a whole foods diet to eliminate all symptoms.

Skylark Collaborator

I vote for thyroid too. Dry skin, hair loss, muscle aches, weight gain, and slow healing are classic hypothyroid symptoms.

Ask your doc if she'll test TSH and make sure she knows the modern reference range is 0.5-2.5. Some labs still don't flag TSH over 2.5 as abnormal.

Npealer Rookie

Thanks everyone for your responses. I went in to see my doc today and she is retesting my thryroid (had it done in Feb 2011 with normal results) She is also testing for other vitamin difiencies. I have always been borderline anemic my whole life so I am sure that may have something to do with it. Now it is a wait and see. I ended up walking out of my pharmacy $80 poorer this morning LOL


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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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