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

After 7 Years, I Think I Got It

richarda83

Recommended Posts

richarda83 Newbie
richarda83
Posted

So after 7 years of going to doctor to specialists to surgeon, somehow I dont know how i missed this. As I am sure many of you have experienced, in your pursuit to discover the cause of your ailments, you get very excited when you THINK you found something, and then you look silly. At many points I have convinced myself that I have AIDs, lupus, sinusitis, gastritis, in need of lymph gland cleansing, had a larger than normal lymph node removed from my neck, had my deviated septum fixed to clear my sinuses, and rounds of antibiotics, antacids, anti fungal, etc.etc.

So fastforward to today, after NUMEROUS jobs, dropping out of college, failed relationships, and a quality of life my 90 year old grandman would feel sorry for, I believe I have found my ailment. I am willing to look silly, because never before have I realised that after I ate a piece of bread the pain in my stomach, irritability, eyes watering, hands and cold and whole body pretty much freezing, that I could be allergic to gluten. So i googled every symptom I suffer from and continued it with celiac disease and COUNTLESS search results came back. I have swollen lymph nodes that were biopsied non cancerous that have fluctuated in size minimally but emit sharp pains via the stomach. I have had sharp pains throughout my body, foggyness in my head, depression, SEVERE anxiety, hair loss, and paleness. I did have allergy testing done but I dont believe I ever had a gluten test done, and by the looks of it, a negative test is meaningless. All I know is after I ate that piece of plane bread today on an empty stomach, I felt like crap, and still feel tired. I just wanted to say to everyone that while I will not confirm my diagnosis until it is professionally given, I am very quite certain I will be a future member. While I do not look forward to a restricted diet for the rest of my life, I would give anything to finally end the 7 year misery that I have endured. I will be going in for testing tomorrow, and I actually hope I get the answer im looking for. Thanks!

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

It sure looks like you might be one of us?

Good luck with your testing. I hope you get some answers.

Be aware that 20-30% of us test negative in our blood work, but do in fact, have Celiac. There's also non Celiac gluten intolerance, so once your testing is done try gluten-free 100% and see how you do?

kittty Contributor
kittty
Posted

This sounds cruel, but I hope you do test positive for celiac. It's just incredible to have answers, after years of beating your head against a wall. I was also at the doctors office constantly, getting no solutions, being sent to random specialists, and being prescribed random medications with no relief. I still don't feel completely well five months later, but I feel so much better! Nothing has ever made me feel better before, and it's a long road of recovery ahead, but making progress feels awesome! I hope you start feeling better soon, and especially hope you get some relief for that anxiety - that symptom is my nemesis. I learned to deal with the pain, the diarrhea, the brain fog, but I NEVER could learn to handle the anxiety.

Good luck!

GFinDC Veteran
GFinDC
Posted

HI,

It sounds lie you could be one of us. Do get all the testing done that you want before going gluten-free. The tests will not work if you have stoped eating gluten before hand.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

Archived

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

Go to topic listing

  • 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
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      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).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      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...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

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

  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748
    Kim RS
    Newest Member
    Kim RS
    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
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      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
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      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.
×
×
  • 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.