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

My Story Of Gluten Poisoning...

Robert M.

Recommended Posts

Robert M. Newbie
Robert M.
Posted

Hello, my name is Robert. I'm new to this forum and to the gluten-free lifestyle. With your patience and understanding I'd like to offer my story of how I've arrived here today.

My problems started about a year ago, I started experiencing stomach pain and a rumbly stomach. At the time I figured it was just stress playing havoc with my tummy, like many folks, times have been tough for our family financially. I saw my doctor who immediately put me on Trazadone for stress, but, my symptoms only got worse. I developed horrible acid reflux and was taking prilosec like no tommorow, but the more I injested to help fix the problems the more my body rebelled. My agony came to a head about one month ago, the pain in my gut was almost unbearable, I developed horrible bowel movement patterns, I could barely make it to the restroom after meals on many occasions (sorry if that is too much info.)My joints ached, my fingers and hands would often have a tingling feeling,I had frequent headaches, my world was crumbling around me. Then, just about two weeks ago I began to notice "the fog". My brain felt like it had short- circuited, I was wondering through my life in a daze. I felt like I was detached, like I was looking at life through someone else's eyes. Well, that did it for me, panic set in deep, which only compounded the problem. I nearly had my wife take me to the emergency room one night after a severe attack of anxiety.

I had to do something, nothing that conventional medicine was offering was helping, in fact, it made things worse. I started fitting all the pieces together, I recalled that just before I started having many of these symptoms I had been on a low carb diet. I was amazed at how good I felt not eating bread, but, I didnt put 2 and 2 together at the time.I searched the web for clues and eventually began my gluten free journey.

And now I'm glad to say Ive been gluten free for 12 days and nearly all my symptoms have dissappeared, still have some minor reflux from time to time. I know my body needs more time to heal but if this is the best I get I can easily live with that.

I just wanted to share my story and would welcome comments from those who may have had similiar experiences.

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

Celiac.com Sponsor (A8-M):


Di2011 Enthusiast
Di2011
Posted

Hi Robert,

Welcome to the forum.

I'm sure many of us (me certainly) will be curious to know your age (sorry.. personal question but not nearly as bad as our digestive openness :lol:) , any change of diet/circumstances etc.

For example: I found that when I was short of money gluten seemed to fill the "gap"

2 weeks is a very quick "recovery" so be sure to stick with what is working for you. Try to avoid mistakes (or tempations) like I have NOT the past 4 months. They have set me back to the point where it is only the past month that has seen real (mostly mistake and definitely temptation-free) progress.

Di

AVR1962 Collaborator
AVR1962
Posted

Welcome Robert! Sounds like you found your answer and I wish you all the best in figuring out the diet and what works for you, we're all a little different in our own needs here and at the same time a great deal of wealth of info among us. If you have not had a vit and mineral bloodwork test, I would request that. It is very common for us to be deficient in certain areas which will cause many of our symptoms. I have been gluten-free for nearly 7 months, did have an ER trip back in Feb that set me on my journey, and doing so so much better. Progress is not over night but it is amazing how you will continue to get better as long as you stay away from the gluten.

Annette

Robert M. Newbie
Robert M.
Posted
  • Author

Hi Robert,

Welcome to the forum.

I'm sure many of us (me certainly) will be curious to know your age (sorry.. personal question but not nearly as bad as our digestive openness :lol:) , any change of diet/circumstances etc.

For example: I found that when I was short of money gluten seemed to fill the "gap"

2 weeks is a very quick "recovery" so be sure to stick with what is working for you. Try to avoid mistakes (or tempations) like I have NOT the past 4 months. They have set me back to the point where it is only the past month that has seen real (mostly mistake and definitely temptation-free) progress.

Di

Hi there, Thanks for your reply. I am a very active 44 year old. Ive been very healthy my entire life (he says knocking on wood). And yes, 2 weeks is a short time but, I really dont consider myself "recovered" just yet. I realize that many people can have very fast relief from many of their symptoms, but, I also fully understand that the healing process could take many months. As far as "set backs", the only issue I've had is when my GI doctor told me that I needed to go back to eating gluten products so he could get the most accurate blood test results and for an endoscopy biopsy. The night after that appointment, I went home and had some pasta and bread for dinner. I got so sick that I had to miss work the next day. So, needless to say I immediately went back to being gluten free and have been fine since. I told the doctor that was all the clinical evidence I needed to confirm my Gluten intolerance. Now, I am able to stay on the diet quite easily because I know how horrible I will feel if I dont. Best of health to you.

Di2011 Enthusiast
Di2011
Posted

Hi there, Thanks for your reply. I am a very active 44 year old. Ive been very healthy my entire life (he says knocking on wood). And yes, 2 weeks is a short time but, I really dont consider myself "recovered" just yet. I realize that many people can have very fast relief from many of their symptoms, but, I also fully understand that the healing process could take many months. As far as "set backs", the only issue I've had is when my GI doctor told me that I needed to go back to eating gluten products so he could get the most accurate blood test results and for an endoscopy biopsy. The night after that appointment, I went home and had some pasta and bread for dinner. I got so sick that I had to miss work the next day. So, needless to say I immediately went back to being gluten free and have been fine since. I told the doctor that was all the clinical evidence I needed to confirm my Gluten intolerance. Now, I am able to stay on the diet quite easily because I know how horrible I will feel if I dont. Best of health to you.

Good on you! Keep well and active!!

AVR1962 Collaborator
AVR1962
Posted

Best thing you could have done for yourself. Many of us have had to do the same. I made it to day 12 after being off and just was too sick to continue. Tests are not accurate in the first place and by continuing on the gluten you are only causing yourself more damage than good. I hope you continue to feel better!

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.