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

Should I Bother With Getting Tested?

TeresaB

Recommended Posts

TeresaB Newbie
TeresaB
Posted

Hello!

I am just wondering if I should even bother with getting tested. I started getting very ill a few times to the point of vomiting after eating wheat. I googled all my symptoms and decided to try going gluten free to see if I would start feeling better. I have been gluten free for 3 weeks now (although I have been accidentally glutened twice!) and I can't believe the difference!

I am 43 years old and was feeling so tired ALL the time it was pathetic. I constantly had achy legs, to the point of punching them just to make them feel better. ( not sure if that makes any sense) I had infertility issues in my 20's/30's and was diagnosed with PCO's. Luckily I have 2 beautiful daughters. I had severe gas every time I would eat. I have had a problem with memory loss and migraines!

Right now I am fighting my way through an accidental glutening and experiencing nausea, headache, constipation and fatigue!:-( this is day 2 and the last time this happened it lasted 3 days!:-(

I am just wondering if I need to go through the actual testing or not.

My favorite symptom to lose is my achy legs which when I would see my doctor about them, she told me that I was carrying my toxins there! Now I know my toxin is gluten! I truly feel like I have been poisoning myself!!!

I am also overweight in my mid section and I am hoping this will help shed some of that.

Thanks in advance for any and all advice!

T

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Well, if you want to get tested, you have to go back to eating gluten NOW, and probably continue eating it for several months before you can be tested.

And then it may still be negative. You may have non-celiac gluten intolerance, not celiac.

Obviously, you know gluten is a problem for you- do you need a dr to agree with you?

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted

Hello!

I am just wondering if I should even bother with getting tested. I started getting very ill a few times to the point of vomiting after eating wheat. I googled all my symptoms and decided to try going gluten free to see if I would start feeling better. I have been gluten free for 3 weeks now (although I have been accidentally glutened twice!) and I can't believe the difference!

I am 43 years old and was feeling so tired ALL the time it was pathetic. I constantly had achy legs, to the point of punching them just to make them feel better. ( not sure if that makes any sense) I had infertility issues in my 20's/30's and was diagnosed with PCO's. Luckily I have 2 beautiful daughters. I had severe gas every time I would eat. I have had a problem with memory loss and migraines!

Right now I am fighting my way through an accidental glutening and experiencing nausea, headache, constipation and fatigue!:-( this is day 2 and the last time this happened it lasted 3 days!:-(

I am just wondering if I need to go through the actual testing or not.

My favorite symptom to lose is my achy legs which when I would see my doctor about them, she told me that I was carrying my toxins there! Now I know my toxin is gluten! I truly feel like I have been poisoning myself!!!

I am also overweight in my mid section and I am hoping this will help shed some of that.

Thanks in advance for any and all advice!

T

That I think is a very hard question. I myself am undergoing testing in large because I feel many of the members in my immediate family exhibit possible signs of celiac but maybe wouldnt accept their risk even if i were diagnosed.

Because it has a clear genetic link, your daughters could be at risk. You may find getting tested not worth your while (as far as you're concerned) because you will more than likely recognize symptoms of gluten intolerance in your girls. I will however remind you that not everyones symptoms are the same and damage can occur before seeing obvious symptoms.

Simply in regards to your health, it maybe helpful to know whether you are celiac if you are concerned about what possible damage has been done and for future preventative care for commonly caused health issues. and for doctors to maybe take you seriously the rest of your life when you are having problems :o Good Luck!

banjos Newbie
banjos
Posted

hi there. i had the blood test panel done and it came back mildly positive but my endoscopy was negative. i have responded so well to being gluten free and have been glutened twice since going gluten-free and it is awful. my symptoms last about three days as well.

so basically for me i am not diagnosed as having celiac but i know that i simply cannot eat any gluten at all. i basically feel like i went through all of the testing for them to say that i don't have the disease but yet here i am thriving on being gluten free (and getting violently ill when i have eaten gluten) so that is enough for me to never eat it again.

in hindsight, i personally don't think i could handle going back on gluten just to get the testing done. but that is definitely something you have to decide for yourself. i would maybe opt for the genetic testing if possible instead of going through the trouble of eating gluten again for months on end.

good luck!

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. Scott Adams
      0

      Gluten-Free Foods in Mexico: A Study Raises Safety and Labeling Concerns

    2. Russ H
      - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease...
    3. 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.
    4. 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).
    5. 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...
  • 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

    • Russ H
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Russ H · Posted

      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • 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.
×
×
  • 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.