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

2 years gluten-free and still in pain

CherylA

Recommended Posts

CherylA Newbie
CherylA
Posted

Hi everyone, I've just joined today after coming across this forum. I was diagnosed coeliac nearly two years ago after been told I had IBS for more than 10 years. I have been doing ok being gluten free and my partner has been brilliant, careful about cross contamination etc but in the past few months I've been in differing levels of pain every day. I can no longer eat corn or oats and have problems with raw tomatoes and peppers. I've switched to dairy free milk and yoghurts and I've always been ok with cheese. I asked my doctor for help and had more bloods done for liver, D12 and diabetes which were all fortunately negative but I'm still in pain. I'm seeing a dietician on Friday but not sure they can really help as last time I found it useless. I tried FODMAP for a month before I was diagnosed coeliac but find it quite restrictive. I just feel at a loss, upset and tired all the time and wanted to speak to like minded people for some support/guidance on how to get my life back ? 

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted
23 minutes ago, CherylA said:

Hi everyone, I've just joined today after coming across this forum. I was diagnosed coeliac nearly two years ago after been told I had IBS for more than 10 years. I have been doing ok being gluten free and my partner has been brilliant, careful about cross contamination etc but in the past few months I've been in differing levels of pain every day. I can no longer eat corn or oats and have problems with raw tomatoes and peppers. I've switched to dairy free milk and yoghurts and I've always been ok with cheese. I asked my doctor for help and had more bloods done for liver, D12 and diabetes which were all fortunately negative but I'm still in pain. I'm seeing a dietician on Friday but not sure they can really help as last time I found it useless. I tried FODMAP for a month before I was diagnosed coeliac but find it quite restrictive. I just feel at a loss, upset and tired all the time and wanted to speak to like minded people for some support/guidance on how to get my life back ? 

Oats are a common issue with celiacs even gluten free ones. About 10% if I recall of celiacs respond to them just like gluten. Corn bothers some of us, I developed a severe allergy to it a few years ago. Tomatoes, and peppers are acidic, and and you can develop issues to them from multiple reasons. It could be a night shade intolerance, it could be a histamine issues, or a SIBO issue.

Best thing is to eliminate them from your diet and you can try bringing them back in a few months. Most of us get rotating intolerance, or permanent ones. Just part of this disease and having a damaged gut. A lot of time a accidentally glutenening can trigger new issues to pop up with a food that might go away later.   Keep a food diary for now and record everything you eat. Try eating a rotating diet removing foods you notice issues with and simplify it for now down to 3-4safe  whole foods while testing like this. Try different ones each day. Once you get a list of good foods and bad foods down you can try changing it up and getting a new normal back.

I myself have a very limited diet, and sometimes have bad and good days >.> dealing with a new found issues today in fact lol. Wish you luck feel free to read around, I openly complain here lots and get opinions and share my experiences here often. Sort of like a family of sorts where you can relate to people with similar health issues.

Wish you luck in finding your current issues, I had a huge revelation and a big turning point with my digestion this year with a bleeding issues etc. We learned I also have Ulcerative Colitis and a new diet plan is leading to much improved health.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Welcome Cheryl IA,

I too avoid oats. In fact since childhood I hated oats. I spent 20 years thinking  I was IBS, but in 2016 a gi Dr said no that diagnosis was not correct . In fact many former diagnoses were incorrect. I was unable to finish my gluten challenge past day 6, and since then my intolerance s are a plenty. In fact today I determined I can no longer take my beloved probiotic. 

Gluten, corn, and milk all are a no go says my body. I must also be careful of processed products that fortify with things derived from corn (even if corn proteins removed etc) . I had to stop an almond milk I was taking for it was fortified with a vitamin derived from corn. People on the boards here like Ennis encouraged me to be whole foods only after my challenge for I was struggling badly. I am finding I do best following a more paleo like diet coupled with beginning to make many things from scratch. It took me 9 months to find a tomato paste without corn. I'll attempt to can my own this summer if the garden fairies and mother nature find me worthy of a healthy and plentiful crop.

I am still not pain free it is now an indicator to drop something or pull out the food diary. Otherwise it almost appears I have thresholds. I indulge in a few gluten-free /corn free potato chips ( I'm weak I must have a vice-guilty as charged) but my body sets an inflammatory limit and I listen.  I am grateful it's summer because I grow all my own herbs etc.and everything is tastier made from scratch, minimal Ingredients but fresh.

Follow Ennis' s  suggestion and yes sometimes we must drop something that we thought was fine prior. Or you may only be able to eat a handful of a vice the body says is inflammatory. I believe my body has to downgrade from each intolerance gradually and its surveillance of it. once it knows one is gone/I remove it ,my immune system then says great let me tell what else ticks me off. 

Best Wishes and quick healing.

Feeneyja Collaborator
Feeneyja
Posted

A lot of celiacs who don't feel well after adopting the gluten free diet test positive for SIBO (small intestine bacterial overgrowth).  It can seem like you are having issues with all kinds of other foods. Namely, foods that are easily fermentable feed the bacteria in your small intestines that don't belong (they belong in your large intestines).   Those with SIBO often have trouble with probiotics because you are adding bacteria to the wrong part of you digestive system. 

Your doctor can test for it by ordering a hydrogen breath test.  Something to investigate as you try to regain your health. 

Here is a site with tons of resources:

Open Original Shared Link

cyclinglady Grand Master
cyclinglady
Posted

Two years since your diagnosis?  Have you had celiac follow-up testing?  This would help rule out gluten as the culprit.  

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. Wheatwacked
      - Wheatwacked replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

      @plumbago, I found a good PDF on cholesterol: Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol. The pharmaceuticals don't seem to be interested in anything but statins. "The nicotine in tobacco...
    2. plumbago
      - plumbago replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and specu...
    3. trents
      - trents replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    4. knitty kitty
      - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

      Wow, @plumbago, Curiouser, and curioser... Have you been fasting? Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract I must say it, try taking some Thiamine. Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or...
    5. trents
      - trents replied to Tyoung's topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis

      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,911
    • Most Online (within 30 mins)
      7,748
    Deborah anne
    Newest Member
    Deborah anne
    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

    • Wheatwacked
      Anyone else with very high HDL?

      By Wheatwacked · Posted

      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Anyone else with very high HDL?

      By trents · Posted

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
    • trents
      Celiac Disease and Mild Chronic Gastritis

      By trents · Posted

      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying finding that is commented on in the post scope/biopsy notes when people are positive for celiac disease. 
×
×
  • Create New...