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Opinions And Help Please


MommaBear

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MommaBear Newbie

Hi,

 

New to the board. I have been googling my symptoms and it brought me here. I have recently had blood work for Celiacs and all of my numbers came back in the normal range. However, I am at a loss on where to go from here. If anyone has any info that can lead me in the right direction I would be forever grateful. My currently symptoms are:

-Anemia & Vitamin D Deficient (am currently taking 50,000mg of D2).

-Have diarrhea with bouts of constipation. (tmi sorry)

-My stomach hurts after I eat, sometimes my mouth actually burns/tingles also.

-I have eaten bagels and gotten a large lump in my throat (like it was closing up) but most times its like I am out of breath.

-I get bloated after I eat.

-Wheat seems to get me more than anything else, but sometimes after I eat gluten thing free things I get a metal taste in my mouth. Also am lactose intolerant.

-I get really tired after I eat. (last week I had pasta for lunch and dinner, I literally became so tired I slept from Friday night to Sunday morning only waking up for about 5 hours on Sat). I have no energy at all.

-Cannot lose weight. I work out 6 days a week for months and am not losing any weight. I have remained at this weight for years.

 

That's all I can think of now. If anyone knows where I should look next I would appreciate the help.


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LookingforAnswers15 Enthusiast

Hi MommaBear,

 

sorry that you are feeling this way. I really do not know nearly as much as some people on here and I am sure that they will give you a great advice. Inability to loose weight, vitamin D deficiency, feeling tired could be connected with thyroid. If I am not mistaken people with Hashimoto may feel this way. Look it up and see if your symptoms match and get tested. As I said, some incredible people on here will be able to help you better since they truly know more than some doctors.

 

Hope you feel better soon. 

cyclinglady Grand Master

Exactly what celiac tests were given? Often just an IGA deficiency and a TTG iga screening tests are given. Some people (like me) test negative on the TTG tests. I only had one positive on the DGP IGA, yet I had moderate to severe intestinal damage based on my biopsies. Here is the complete panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Welcome to the forum!

MommaBear Newbie

Thank you for your responses. They have tested my thyroid (twice) and my numbers were normal. For the blood tests my results were:

 

Immunoglbln M Serum 91 - 414 mg/dL 300 Gliadin IgA 0 - 19 units 6 Gliadin IgG 0 - 19 units 3 Transglutaminase IgA 0 - 3 U/mL <2 Tissue Transglut Ab 0 - 5 U/mL

<2

 

I am waiting for a referral to an allergist. If that doesn't help, I really don't know where else to turn.

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    • 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. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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