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Not Celiac

Gerri

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Gerri Explorer
Gerri
Posted

I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri

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nora-n Rookie
nora-n
Posted

Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

ravenwoodglass Mentor
ravenwoodglass
Posted
I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri

After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Gerri Explorer
Gerri
Posted
  • Author
Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

The GASTRO took 3 biopsies I believe. She didn't give me a copy of the report. She pretty much brushed me off, and told me to loose weight. I had to get her to go over her report to find out about the hernia, and my inflamed esophogus. (Oh, she did say I had GERDs, and IBS again.)

I lost 10 lbs right after going off gluten, and haven't loss any since. I eat like a bird, definitely not hungry.

Definitely not on gluten. I having more Lupus like symptoms. The criteria for Lupus, to be diagnosed with lupus is 4 out of 11, and I have 10. My doctor won't diagnose me with Lupus unless my ANA is positive, and as of 4 years ago it was negative.

My friend tends to think, I have adrenal gland fatigue, which is causing thyroid problems. My family doctor says NO!!!

I off gluten indefinitely now, GASTRO said it will help with the IBS :)

Hugs

Gerri

Gerri Explorer
Gerri
Posted
  • Author
After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Hi

If I am indeed not Celiac, then the hell I went through was because of severe increase in my allergy to sulfites, which is in all gluten products. When I increased the gluten bread, pasta, and most baked gluten products, I increased the sulfites. I have had anaphalatic shock from sulfites. When I stopped the gluten, I also decreased the sulfites, and loss ten lbs.

The GASTRO, believed I was only gluten intolerant, also said that by staying on the gluten diet it will help with the IBS. The GASTRO, wants me to lose so much more weight. My friend thinks I have Thyroid problems. She bets her life on it. If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

The Lupus symptoms I am dealing with has increased dramatically. It seems my allergies to sulfa, sulfates, sulfites, sulfur and derivitives continues to increase. Most vegetables have natural sulfur in them. I am feeling worse daily. I don't know what to do. The stomach pain last night woke me out of a sound sleep. Only my hands, arms, face and eyes are now swollen. GERDS is up and down. My elbow, and back pain, continues to be bad.

I was looking at the bottom of your post. I have many of your misdiagnoses.

Hugs

Gerri

ShayFL Enthusiast
ShayFL
Posted
If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

You do not have to be a slave to your doctor. You can find a new one. Or you can order your own thyroid tests. They arent very expensive. www.healthcheckusa.com usually has very good prices. You dont need a doctor to order the tests from them. Even if you have to sacrifice something you normally buy to afford the tests, it will be worth it.

I got my own tests and took them to my doctor with a copy of the new lab ranges for TSH. After 12 years of hell I finally got treatment for hypothyroid. It changed my life!!

nora-n Rookie
nora-n
Posted

There are some people here who are very intolerant of sulfites, one is Rachel in the OMG thread here in the other food intolerance folder. The thread started with corn, but corn was not the issue, but sulfites and salicylates. And it has to do with the methylation cycle, with detoxification. When something is broken in the cycle, it dose not work properly and you feel sick when you get too much of something that clogs it all up. Like sulfites and sulfur in some cases, depending on what is broken. You can pop over and compare notes.

nora

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confused Community Regular
confused
Posted

I was going to recommend what nora did. You should pop on over to the omg thread.

paula

Fabulous40 Newbie
Fabulous40
Posted

Gerri -

Are you seeing an MD or a DO?

I switched from a medical doctor to a doctor of osteopathy because my medical doctor wouldn't diagnose me with anything and just gave me LOTS of medicines for each individual issue. I was gaining weight while exercising and eating properly (I thought). I had lots of gastro issues, high blood pressure, high cholesterol, migraines, hot flashes, night sweats, and depression. I really thought I was going through menopause, although I'm only 40, and I felt like crap all the time. I was taking Nexium for acid reflux, Zocor for cholesterol, Maxalt for migraines, Celexa for depression, and Cozaar for high blood pressure, along with a whole host of supplements for the menopause-like symptoms.

My DO figured out I was insulin resistant (which was causing menopause-like symptoms), and he suggested I delete all gluten products from my diet (because I'm type O blood and because of my gastrointestinal issues). He suggested cinnamon and tumeric for glucose control, and acai for general well-being. He also suggested acupuncture. I have lost only 7 pounds (slowly), but I feel so much better. My DO has taken me off of all my meds except the blood pressure medicine, and my cholesterol and insulin seem to be under control. I don't have the migraines, hot flashes or night sweats anymore, and my mood has increased dramatically.

I guess my point is - find another doctor for another opinion if you can afford it. Look for a doctor of osteopathy because they treat the whole person, not just individual symptoms. I know you are miserable, but perhaps the right doctor will make the right diagnosis and you'll get your body back under control.

Best of luck to you.

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    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      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
      What should I do with these test results?

      By trents · Posted

      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.
    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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