Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help it's bad this time

Annieoh

By Annieoh
in Coping with Celiac Disease

 Share

Recommended Posts

Annieoh Apprentice
Annieoh
Posted

Help! I'm struggling like I've not in YEARS. The flareup is intense and at this moment, figuring the cause (what the heck did I eat? What could it be? Was it this? Was it this???)is secondary to just getting over it. Feeling desperate.

Some background: I figured out my sensitivity to gluten on my own through elimination diets. It came on in my late 40s, I'm now 53. When I'm strict with my diet, I'm good. My symptoms are constipation, fatigue, brain fog, sleeplessness and possibly the worst - chronic sneezing, itchy face and eyes. I suspect the histamine reaction is due to leaky gut. I'm working on that. I don't know if I just got glutened and maybe the leaky gut got so much worse that anything I eat triggers a histamine reaction now? I'm reaching.

For years I didn't know what was happening to me so all those years of abuse my nose took, I developed nasal polyps and rhinitis. Usually if I get glutened, measures such as drinking fresh ginger tea, keifer, eating bland meals with lots of dark greens and keeping hydrated does the trick in a few days. This time is bad and nothing I do is helping. It's been over a week and I can't take it. My face and nose are on fire and I am so foggy and fatigued I can barely work. I just want to go to sleep so I don't have to feel the misery. I need whatever got in me to leave my body.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted
(edited)

Hi, @Annieoh,

Sorry you're feeling so poorly.

Are you eating a low histamine diet?  No processed foods like sausages and gluten free cookies, no canned foods, no nightshades (tomatoes, potatoes, eggplants and peppers because they promote that leaky gut), no eggs, no alcohol, no fermented foods like sauerkraut, keifir, and yogurt, no dairy, no smoked foods. You may want to revert to the AutoImmune Protocol diet which is basically fresh meat and veggies.  I find this helps immensely.  

How is your Vitamin D level?  I found this interesting article linking Vitamin D deficiency and nasal polyps....

"Vitamin D deficiency is associated with increased human sinonasal fibroblast proliferation in chronic rhinosinusitis with nasal polyps"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4921271/

And to help process the excess histamine out of your body, Vitamin C and Vitamin B6 are helpful, along with magnesium (will help with the constipation, too) and Vitamin B1 (benfotiamine and allithiamine will help with the fatigue).  A good gluten free B-Complex vitamin supplement all the time will help you cover those deficiencies that can occur on a gluten free diet.

Hope you feel better soon!  

Keep us posted on your progress!

 

 

 

 

Edited by knitty kitty
Typo
Annieoh Apprentice
Annieoh
Posted
  • Author

Thank you for posting and sharing that article. Very interesting!  This makes a lot of sense. I’m already taking Vit D as my muscle aches made me suspect I was deficient. but I’ve not been diligent. Another good reason to be more committed. Will def research further. Yes I had doubled down on eating only anti inflammatory foods since the glutening along with other measures that usually helped in the past but this time didn’t. Incidents have become so rare for me that I’ve become sloppy.

*I’ll keep going* in case it’s useful for anyone with similar issues. Thankfully I’m passed the worst of it (at least the GI part) now on to healing the super inflamed nasals. Using a Netti Pot (without the saline) helped with the fiery mucous membranes. But Interestingly, smoking some CBD-only (trace amount of THC) banished the irritation in my nose altogether. My husband picked some Up for me at a local dispensary. It was a last ditch effort. I’m feeling MUCH better now. Cannabis is legal in California and I’m not saying it’s would be the answer for everyone with irritated sinuses or rhinitis flare up but worked for me in this instance. As the recent culprit, At this point I’m suspecting a vegan gluten free marshmallow offered to me by a fellow backpacker during a trip. It was the only thing out of the ordinary that I ate. My bad. I normally NEVER accept food from others unless I can research first and if I eat a marshmallow it’s only Kraft Jet Puff. but the ingredients didn’t list anything suspect and i was feeling safe. These were Dandies. Their gluten statement: “Dandies are manufactured in a gluten free environment on a dedicated gluten free line. While we process gluten in our building, we strictly control the usage and storage of wheat in our facility in accordance with our Allergen Management Program.” Never again.

knitty kitty Grand Master
knitty kitty
Posted

@Annieoh,

I'm very glad you are feeling better.   You're very lucky to live in California.  

I'm curious if airborne wheat in the marshmallow factory was the problem.  

Keep us posted on your progress! 

Best wishes for a speedy recovery! 

 

 

Scott Adams Grand Master
Scott Adams
Posted

Here are some ideas:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,918
    • Most Online (within 30 mins)
      7,748
    Linda matthews
    Newest Member
    Linda matthews
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • 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
×
×
  • Create New...