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Coming Appointment


dani nero

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dani nero Community Regular

It seems I'm getting that appointment with a new doctor soon, but I'm worried about being sent home for the third time while being told, and I quote "eat less bread and pasta and you'll feel better" without even asking what I eat.

It would be really nice to get some heads up and tips on how to convince them to take me seriously in case the doc is as horrible as the previous one. What questions should I ask, and what should I be aware of?

I put together a list of my symptoms which I plan on taking with me

amenorrhea

constipation

muscle weakness

anxiety, depression & panic

elevated heartbeats

shallow breath

fatigue

bloat

rash

bent nails

yellow teeth

brain fog

non-stop sinus and cold symptoms

swollen lymph nodes (on and off)

sore throat (on and off)

dry eyes

angular chelitis

Scalp & other "place" itch (on and off)

dry skin


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stanleymonkey Explorer

take any old test results with you

prepare a list of questions you want to ask, I got to see the head of department for my daughter and I wish now I'd prepared because there were things I never for to ask

a family history if there are autoimmune conditions - on my husbands side there is crohns, hypothyroidism, hyperthyroidism, anaemia and our pediatricians said that combined with positive genes and diet response is enough to convinced him she has celiac

dani nero Community Regular

take any old test results with you

prepare a list of questions you want to ask, I got to see the head of department for my daughter and I wish now I'd prepared because there were things I never for to ask

a family history if there are autoimmune conditions - on my husbands side there is crohns, hypothyroidism, hyperthyroidism, anaemia and our pediatricians said that combined with positive genes and diet response is enough to convinced him she has celiac

Thanks. I'll put together a family history :-) Knowing what to ask is why I'm posting here.. What type of questions do you wish you asked at the time?

BabsV Enthusiast

When you discuss the symptoms you might want to mention which ones seem to be "worst," have lasted the longest or impact your life the most. Also, to what degree do they impact your life? For example, I spent months telling my doctors I was having pain issues but it was only after I said, "Some days my pain is at 8 or 9 out of 10 on a scale of 1 to 10 and it means I cannot function even close to normally -- I am tired, cranky and snapping at everyone!" that they finally decided it needed to be addressed. Gesh. A big part of that miscommunication was my fault...I'm kicking myself since we're still trying to address the pain issues now that I am 7 months gluten-free and they are still a problem (my 6-month blood tests show a nice drop in antibody levels so now we're looking at other things that might be causing the problem, as my doctor said last time, "You can't automatically blame EVERYTHING on Celiac!" even though some days I want to!)

Also, if you have specific questions like, "Could some of this be related to thyroid problems," or anything else you feel might be an issue bring it up. My GP at the moment is very nice but not very knowledgeable about Celiac. He is however, willing to entertain anything I bring up as something to investigate -- I was the one who pushed for blood tests soon after diagnosis and they showed me slightly (very slightly) anemic.

Share what you have done in terms of the diet, cleaning the house, checking medicines, etc. Then you can't be dismissed with a simple, "You need to do better with the diet" and a pat on the head.

Make the doctor realize that you view the doctor-patient relationship is a partnership and you will give 110% in terms of regaining your health. Hopefully she or he won't be too autocratic (I'm in Poland right now and a lot of the doctors are Old School and just want to proclaim, not actually listen...)

Good luck!

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    • Nicbent35
      Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?
    • Scott Adams
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    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
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    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
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