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Any suggestions please help


Morenaroo

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Morenaroo Newbie

Recently I have been diagnosed with celiac. I am aware there are hidden glutens in many of our foods. Currently I am in a celiac flare up/inflammation.

Most times after I eat I visit the bathroom within 30-60 minutes and my stomach is extremely bloated which feels like my stomach is bruised. 
Sometimes I don’t eat because it’s easier than the alternative. 
When I fast I drink water and bone broth.
Because my issue has been going on for years I am extremely fatigued and food intake does not give me energy.

I am asking for recommendations, recipes and overall food that helps.

I am working with a holistic doctor and a GI doctor to help with this flare up.

Thank you,

Mo

 


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trents Grand Master

Welcome to the forum, Morenaroo!

Sounds like the issue for you is learning where and how gluten is hidden in our food supply, particularly processed foods. There is a definite learning curve for avoiding gluten. Takes a year or two but you eventually develop a sixth sense of what to avoid. Perhaps this will give you a jump start:

Everything must be scrutinized: food, medications, supplements, oral hygiene products, chewing gum, lip balm, etc. Studies show that most people who believe they are eating gluten free are actually eating lower gluten but not gluten free. This is particularly true of those who still eat out.

The other part of this is correcting vitamin and mineral deficiencies that have inevitably developed over the years of not being diagnosed and the resultant damage to the villi that line the small bowel. This is the area of the intestinal track where essentially all of our nutrition is absorbed. When the villi are worn down by celiac disease, absorption of nutrients becomes compromised. We routinely advise people to on a high potency B vitamin supplement, plus sublingual B12, at least 5000 IU of D3, magnesium citrate or magnesium glycinate and zinc. Make sure all vitamins and supplements are gluten free. Costco's Kirkland and Nature Made products are generally a good choice.

Scott Adams Grand Master

We have tons of gluten-free recipes in this category:

https://www.celiac.com/celiac-disease/gluten-free-recipes/

knitty kitty Grand Master

@Morenaroo,

Gastrointestinal beriberi is caused by a deficiency in Thiamine Vitamin B1.  The symptoms I had are similar to what you describe. 

Here's more information...

Gastrointestinal beriberi: a forme fruste of Wernicke's encephalopathy?

https://pubmed.ncbi.nlm.nih.gov/29982183/

And...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

High dose Thiamine corrected my symptoms!

Hope this helps!

Wheatwacked Veteran
(edited)

Check your vitamin D blood level.  Normal in summer is 80 ng/ml (200 nmol/L).  I require 10000 iu a day to keep it there.  Vitamin D at higher levels modulates the immune system.

For energy heres my current list.

  • Thiamine  500 mg
  • B3 500 mg
  • B5 500 mg
  • B12 1,000 mcg (1 mg)
  • Taurine  1000 mg essential antioxidant amino acid
  • Choline 500 mg - required for fat digestion.
  • Magnesium Citrate - 500 mg I add two ounces of the Grape flavor kiqud to 20 ounces of water.
  • Nori or Kelp for iodine  - muscle tone, thyroid health

In the morning I have coffee or espresso, Kelp and a Red Bull.  Red bull is only essential vitamins needed to turn glucose to energy, minerals, real sugar and flavoring.  No exotic herbs, just plain nutrition.

I eat mostly garden vegetables, salmon, eggs, beef.

On 7/19/2023 at 12:01 PM, Morenaroo said:

ometimes I don’t eat because it’s easier than the alternative. 

Been there.  A lifetime of coffee and cigarettes to subdue hunger.

But, as I remind myself often, Eating is Not Optional.

Edited by Wheatwacked
  • 4 weeks later...
patty-maguire Contributor

Other posters have giving good advice for recognizing gluten in your food.  To address your ongoing bathroom issues, I have 2 suggestions:

1. At least for a while, avoid gluten free processed foods.  They often contain ingredients like emulsifiers and starches that can be hard to digest.  If you focus your diet on naturally gluten free whole foods, you may find that the inflammation settles down.  A gluten free version of the Mediterranean diet is a good template.  Also look up the Fasano diet.  Dr. Alessio Fasano who is a world renowned celiac expert recommends this for his patients who continue to have issues on a standard gluten free diet.

2. Consider if you may have other food intolerances.  Lactose intolerance is very common among newly diagnosed celiacs.  Try cutting out dairy and see if that helps.  Once your gut heals you may be able to re-introduce dairy products.  Most recommendation are 6 months to a year.  Other common intolerances among celiacs are oats (even gluten-free oats), eggs, soy.

All the best.  You've got this, it's just a bit of a learning curve.

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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?
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      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
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • 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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