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suffered with a awful kind of headache for three years

bucketoflove
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bucketoflove Newbie
bucketoflove
Posted

it almost felt like my brain was moving (absolutely awful feeling)

anyway after eventually going wheat free i have found the head feeling has all but gone

but eat anything with wheat in it and it's back with a vengeance 

my question is does anyone have any experience with these kind of symptoms and can maybe tell me what's wrong with me?

I could go on but I will leave it at that for now thanks

 

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trents Grand Master
trents
Posted

Have you been officially diagnosed with Celiac disease?

I'm just wondering why you would purposely eat something with wheat in it if you know it gives you headaches.

bucketoflove Newbie
bucketoflove
Posted
  • Author

I never knew it was wheat until pretty recently that was causing it, I never understood gluten and all the different foods that contain wheat and gluten, I am only just now making it to be totally wheat and gluten free.

but if I'm honest its left me with more questions and worry

I'm also sure i can tell if a food has traces of wheat or gluten in as the headache starts again

sorry as all this is all kind of new to me I'm just happy in a way to have found the cause of all this

trents Grand Master
trents
Posted

Let me say that your next step should be to get tested for Celiac Disease. It is not an allergy to wheat, it is not an intolerance. Celiac Disease is an autoimmune disease. The ingestion of gluten triggers an inflammatory response in the small bowel that damages the "villi" (the lining of the small bowel where nutrient absorption takes place). celiac disease has all kinds of spinoffs, many of them related to nutrient deficiencies. Headaches/migraines is one of them. But in the long term, celiac disease is a serious condition that can cause osteoperosis, neurological damage and liver damage, anemia and a host of other things. There is a strong correlation between Celiac Disease and headaches.

There are blood tests to diagnose Celiac disease but that should be the first stage of diagnosis as they are not always reliable. The gold standard test is an upper GI where they biopsy the small bowel lining and examine the condition of the villi under a microscope. An experienced gastro doc can sometimes recognize the presence of Celiac Disease during the scoping by the general condition of the small bowel lining.

Scott Adams Grand Master
Scott Adams
Posted

Keep in mind that if you do get a blood test for celiac disease you need to be eating gluten daily for 4-6 week before the test:

 

bucketoflove Newbie
bucketoflove
Posted
  • Author

ok well thanks for your replies I had a feeling it was going to be something I should be more concerned about. I know my father has some kind of problem with his bowel but we do not see each other so it's hard to find out what. i am 42 by the way and this just came on out of the blue around 4 years ago and had gotten unbearable.

I think it's time to go and see the doctor as I have noticed an improvement in my insomnia and depression since going wheat/gluten free

it all seems kind of strange at the moment but starting to make sense

I will also continue to read more of the posts here 

 

Scott Adams Grand Master
Scott Adams
Posted

By the way, we've done lots of articles on the connection between gluten and headaches in sensitive individuals:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/ 

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bucketoflove Newbie
bucketoflove
Posted
  • Author

thank you I will check it out

GFinDC Veteran
GFinDC
Posted
(edited)

Hi BOL,

Trents is right about celiac being an AI (auto-immune) condition.  The celiac immune response is triggered by a protein in wheat, rye and barley.  Some of us also react to oats.  It only takes a very small amount of gluten to trigger the immune response and it can continue for weeks to months.

Celiac can cause malabsorption so your doctor should do a test of your vitamin and mineral levels.  Some doctors are not familiar with celiac disease as it was once considered very rare.  So it can be helpful to do an internet search for doctors who are knowledgeable about celiac.

Edited by GFinDC
DJFL77I Experienced
DJFL77I
Posted

you'll still have the anti bodies for blood test even if you're on gluten free for a short time.. like a week or so..     thats what my Dr says at least..   He already knows i have it via endoscopy biopsy.. but wants the blood test..  I've been on gluten free for about 1 week but he said it doesn't matter just get it asap..  so im going this morning

DJFL77I Experienced
DJFL77I
Posted

its still an allergy though.. it causes allergic reaction

trents Grand Master
trents
Posted
2 hours ago, DJFL77I said:

its still an allergy though.. it causes allergic reaction

People can have an allergy to gluten (as they can to almost any protein) but Celiac disease is classified as an autoimmune disease. When you read food labels gluten is found in the allergy information but that's because the food companies don't have a category for autoimmune disease triggering ingredients. Antibodies are produced anytime the immune system is engaged, not just with allergies. Think of COVID-19. Consuming gluten causes the body to attack it's own tissues, that's why it's called an autoimmune disease.

DJFL77I Experienced
DJFL77I
Posted

well whatever it is its chit

GFinDC Veteran
GFinDC
Posted
(edited)
2 hours ago, DJFL77I said:

its still an allergy though.. it causes allergic reaction

Hi DFL,

This may come off as splitting hairs to you, but allergies are an IgE immune response, while celiac is an IgA and/or IgG immune response.  If you look up the difference between the types of immune cells you'll find that IgE cells tend to affect the respiratory system etc while IgA and IgG cells generally don't.  So celiac is not an allergic reaction because it doesn't involve IgE cells.  That's probably why doctors don't prescribe anti-histamines for celiac disease patients.

It's all just more fun stuff to learn about your new condition!  :) 

All that being said though, my hayfever allergy symptoms vastly improved after going gluten-free.  They are not gone but I don't need to take allergy meds all the time now.

Edited by GFinDC
trents Grand Master
trents
Posted

I think it also needs to be said that this is one of the hardest concepts to grasp for newly diagnosed Celiacs, that something you are eating is causing the body to attack itself. I think that's why it's so hard for those new to the experience to grasp that it is not an allergy.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
On 6/24/2020 at 9:32 AM, trents said:

I think it also needs to be said that this is one of the hardest concepts to grasp for newly diagnosed Celiacs, that something you are eating is causing the body to attack itself. I think that's why it's so hard for those new to the experience to grasp that it is not an allergy.

That and often society at large dismisses AI  based food issues/illness. In general they don't believe in them where as IgE mediated allergies are more socially acceptable. Sad but true.

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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
      Water filters and gluten

      By MaryMJ · Posted

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