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- MagsM replied to MagsM's topic in Related Issues & Disorders10Inflammation and Menier’s disease link?
I have copied in a summary of my latest bloodwork from ChatGPT below. My GP will not refer for any further investigation and given that I do not have gastric distress symptoms it doe seem that I do not have classic Celiac but may have some malabsorption issues. I am now considering just going forward with a gluten free regimen and tracking symptoms. I will... -
- Wheatwacked replied to Natosha's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms3Should I ask for more testing? Celiac vs. Gluten Sensitivity
It seems the "fad" diet is working for you. -
- Mari replied to Vickey Matteson's topic in Coping with Celiac Disease1Upset stomach
Hi Vicky' If you are hesitant to visit your medical provider and if this discomfort persists you may choose to do that. I do have some suggestions and how ai have delt with digestive problems not caused by gluten but likely a result of having the autoimmune reaction in my small intestine for all the years before going gluten free. Before I stopped eating... -
- Wheatwacked replied to Stephanie Wakeman's topic in Coping with Celiac Disease5
Is it common to develop a wheat allergy in addition to Celiac Disease?
Hi @Stephanie Wakeman, Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L. This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses. Vitamin D deficiency... -
- RMJ posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0Damage after 13 years gluten free
I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t h...
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I have copied in a summary of my latest bloodwork from ChatGPT below. My GP will not refer for any further investigation and given that I do not have gastric distress symptoms it doe seem that I do not have classic Celiac but may have some malabsorption issues. I am now considering just going forward with a gluten free regimen and tracking symptoms. I will see the Consultant Otolaryngologist tomorrow and will share these results. I have already ordered the B-Complex and Benfotiamine and will start that regimen soon. Any feedback and your amazing expertise truly appreciated... Key Immunological and Nutritional Findings Test Result Normal Range Interpretation Tissue Transglutaminase IgA. <0.2 U/mL. <7.0 = Negative Strongly negative — rules out celiac disease Endomysial Antibodies (IgA). <10 Negative Supports absence of celiac disease Total IgA 1.94 g/L 0.65–4.21. Normal IgG / IgM 8.47 / 2.04 g/L Normal. Normal immune status ✅ These results do not indicate immunodeficiency. IgA is sufficient to make celiac testing valid, and IgG/IgM are in normal range. ⚠️ Nutritional / Absorption Concerns TestResultNormal RangeInterpretation Folate (B9) 3.1 ng/mL. 3.1–20.5. Low-normal — borderline deficient Total Protein. 63 g/L. 64–83 Slightly low Ferritin. 33 ng/mL. 15–150. Normal, but low-normal; could reflect depleted stores 📌 This constellation of results suggests possible subtle malabsorption, suboptimal nutrient intake, or a functional GI issue — even in the absence of celiac disease. 🔄 Implications for Ménière’s and Autoimmunity While there's no evidence of classic autoimmune disease or celiac, subtle immune dysregulation and non-celiac gluten sensitivity (NCGS) cannot be ruled out. Your symptoms and lab pattern could still fit with an immune-mediated or inflammatory trigger for Ménière’s flares. Borderline nutrient deficiencies (folate, protein) may affect inner ear function or neuronal stability, indirectly exacerbating symptoms. Nutrient absorption issues might stem from subclinical GI inflammation, dysbiosis, or food sensitivities. 💬 Suggested Talking Points for Consultant Could a functional immune or inflammatory mechanism be driving Ménière’s in the absence of overt autoimmunity? Does a trial of immunomodulatory therapy (e.g., steroids, antihistamines) make sense if flares persist despite dietary changes? Would referral to a GI specialist or dietitian be appropriate, given borderline folate, protein, and symptom profile? Continue gluten-free diet trial for 4–6 weeks to assess symptomatic improvement, even in absence of celiac serology. Explore possibility of non-IgE food sensitivities or mast cell activation, especially if symptoms are episodic and food-triggered.
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By Wheatwacked · Posted
It seems the "fad" diet is working for you. -
Hi Vicky' If you are hesitant to visit your medical provider and if this discomfort persists you may choose to do that. I do have some suggestions and how ai have delt with digestive problems not caused by gluten but likely a result of having the autoimmune reaction in my small intestine for all the years before going gluten free. Before I stopped eating gluten I had a leaky gut. The gluten inflammatory reaction let other food molecules get just far enough into the wall of the small intestine to be recognized as invaders so I began reacting to them at a very low level, not very noticeable. When you eat a meal it goes into the stomach and is liquified in a highly acid environment. This may take up to 2 hours. This acidic fluid is then released into the beginning of the small intestine where, as it is released, bile is squirted into it . The bile is very alkaline so it neutralized the acid. Without that bile being available the liquid that is released from the stomach may remail too acid and cause discomfort. Many people use antacids to stop the burning but I don't do that because it did not get at the real cause. \\I wrote that I had developed other food intolerances or allergies that weren't noticeable when I was eating gluten foods. Except for hot peppers and all of the nightshade family. I have mild reaction to other foods. Those reactions cause enough inflammation in my digestive system that impeded food from passing down the small intestine so that when the food was released from the stomach it had no place to go because the small intestine was still having difficulty pushing it along. When the stomach can't release the acid liquidified food down it tends to be forced up resulting in acid reflux. I learned to do gentle massages of my abdomen and over the last 18 years eliminated many foods from my diet. What I did not realize, although many celias have reported this, is that once a person reacts to a food even tiny amounts of the food I have eliminated, will cause inflammation in my stomach and upper intestine I was getting these very small amount of reaction causing foods in supplements, by cross contamination . Now if soy or corn, to name just 2, is on a label I don't buy it. Another suggestion is to drink enough water to keep yourself hylrated. That information is available online and depends on you height and weight. I am not a medical practitioner so what I wrote is only from my own experience and what I think about the causes of some of my digestive problems.
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By Wheatwacked · Posted
Hi @Stephanie Wakeman, Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L. This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses. Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions. Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient. -
I’m frustrated with celiac disease and my current gastroenterologist (GI). I’ve been gluten free for almost 13 years, with normal antibodies for almost 8 years - except for one excursion of my DGP IgA 5 years ago which returned to normal when I changed brands of gluten free flour. All 4 celiac antibodies were positive 13 years ago but I didn’t have an endoscopy for reasons unrelated to celiac disease. I did have one 9 years ago. The DGP IgA was still slightly elevated, GI saw some blunted villi visually, biopsy showed “patchy mild increase in intraepithelial lymphocytes” and “focal mild villous blunting” (Marsh 3A). For the past few years I’ve had intermittent trouble with nausea and stomach pain so my current GI suggested doing a repeat endoscopy. He saw nothing visually, but biopsy showed “focal mild intraepithelial lymphocytosis” and “minimal focal villous blunting”. All I got was a letter from the GI and his nurse that said there were mild changes consistent with celiac disease. I sent a message to the doctor asking where I go from here but just got an answer from a nurse saying it is better, less damage than 2016 so keep following the gluten free diet. So focal is better than patchy for increased lymphocytes and minimal focal is better than focal mild villi blunting? I feel this biopsy result after 13 years deserves some discussion, but this doctor never answers messages, his nurses just give out canned responses, it takes 6 months to get an appointment, and his only suggestion for nausea and pain was more soluble fiber. I’ve read that adults may not heal completely on a gluten free diet but with normal antibodies for years I was not expecting this result. I have made an appointment with a different GI who hopefully is more communicative. Rant over. Thanks for reading.
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