Jump to content
  • 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

Just getting started here. Need more help!


clutchlee

Recommended Posts

clutchlee Rookie

Have not had a diagnosis.  But I need help sorting through my symptoms.  Thanks to cyclinglady and GFinDC for your previous responses.

For those on the forum who have a a Celiac Diagnosis, I have questions about your symptoms prior to diagnosis.  Did your symptoms fluctuate on a daily basis or were they pretty constant?  Did just the act of eating and digestion make them worse, even without ingesting gluten?

My symptoms currently include fatigue, insomnia, burning mouth syndrome, blurry vision, some loose stools and some gas.  The blurry vision and burning mouth are brought on by eating/digestion and continue throughout the day worsened by more eating.  Symptoms continue even as I try to eliminate gluten.

Thanks so much for your feedback!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I have celiac disease.  From what I have learned through research is that symptoms can wax or wane.  There is no consistency at all.  This applies to me personally.  At the time of my diagnosis, I was just anemic.  I had always been anemic which was attributed to my being a woman and Thalaseemia (genetic anemia), but during an initial consult to the GI for a routine colonoscopy (over 50), he looked at my chart and told me that he thought I had celiac disease.  I was shocked.  I had no intestinal issues.  There was no direct correlation of symptoms when I consumed gluten.  Many people have no symptoms at all!  

Since then I have been glutened twice.  Symptoms have drastically changed.  Now I get intestinal issues.  The first time severe and the second not so severe.  In both cases, I have no idea what caused the glutening, but my current GI did measure my antibodies and they were again elevated.  Those symptoms took three months to resolve.  

The best thing is to ask your MD to give order a celiac blood test, but you have to be eating gluten daily for the tests to work.  Go gluten free?  I would NOT recommend it until you have been tested.  

I wish you well.  

 

clutchlee Rookie

Thank you cycling lady.  Going to MD next week.  Are the Celiac Blood tests and those described in the Univ. of Chicago website (you suggested) for Gluten Intolerance, the same??

Thanks so very much!

cyclinglady Grand Master

Yes.  If possible, ask for the complete panel and not just the screening TTG.  Why?  You could be an odd duck like me who tests negative to the TTG.  

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      313

      Terrible Neurological Symptoms

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      313

      Terrible Neurological Symptoms

    3. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      313

      Terrible Neurological Symptoms

    4. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Reverse Osmosis (RO) Water

    5. - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Water filters are a potential problem for Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,579
    • Most Online (within 30 mins)
      7,748

    Sugarmapoops
    Newest Member
    Sugarmapoops
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
    • Scott Adams
      Bottled water, filtered water, distilled water, and products like Gatorade are naturally gluten-free and do not contain gluten unless contaminated during manufacturing, which would be highly unlikely and subject to labeling laws. Gluten is a protein from wheat, barley, or rye—it is not present in water, minerals, plastics, phosphates, bicarbonate, or electrolytes. Refrigerator filters and reverse osmosis systems are not sources of gluten, and there is no credible scientific evidence that distilled or purified water triggers celiac reactions. If someone experiences symptoms after drinking a specific product, it is far more likely due to individual sensitivities, anxiety around exposure, or unrelated health factors—not gluten in water.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.