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

Higher Sensitivity?


CMCM

Recommended Posts

CMCM Rising Star

I thought I asked this before, but couldn't find it anywhere so perhaps not.

So I've had intermittent digestive problems for at least 20 years, and had tentatively decided at the very least I had a problem with dairy, so I ate it in tiny amounts and not every day. I didn't think of gluten because I wasn't underweight; in fact, I was 20 lbs, too heavy and no matter what I did I couldn't lose it. I'm not totally sure, but I'm thinking my own "trigger" might have been a surgical procedure I had 6 years ago for uncontrolled bleeding....I lost so much blood I got horribly anemic, could barely walk and nearly had to have transfusions it was so bad. I had general anesthesia with a D&C to correct the situation, which it did. However, the whole thing was somewhat of a trauma and it took me several weeks to feel better and get the iron levels back up to normal. In retrospect, I think my digestive woes have been getting progressively worse since then.

Before Thanksgiving I had a frightening dizziness/nausea episode that came out of nowhere and lasted for about 5 hours, then I felt kind of yucky the next day, and was OK the day after that. I got suspicious when I realized my diet for the 10 hours prior to the dizzy spell had been megadoses of wheat foods. I found this site, got really suspicious, and as a result, went gluten-free the day after Thanksgiving. I felt great within a couple of days. The bloat disappeared, my asthma-like symptoms and chronic cough totally disappeared for the first time in nearly a year or more, I just felt great. Fast forward to Christmas, I did a bit of isolated binging. Sugar cookies 2 days before Christmas (no huge reaction), good on Xmas except for a few pieces of Cheesecake, which had a graham crust, and than a few days ago, a couple of sugar cookies and a chunk of spice bread. KA-BOOM....major pain and burning now from eating virtually anything. I don't know what to eat at this point. I'm starving hungry, but afraid to eat anything.

After being gluten-free, do gluten exposures create a worse reaction than when I was eating it all the time? This hardly makes sense, but it sure seems to be what is happening. :(


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star
After being gluten-free, do gluten exposures create a worse reaction than when I was eating it all the time? This hardly makes sense, but it sure seems to be what is happening. :(

It did for me. Even though I was really, really, really sick for almost 2 months before starting going gluten-free, since then anytime I've cheated the pains are worse, regardless of how little or much gluten exposure I have.

Maybe someone else can explain it better than me.

~lisa~

drewsant Rookie

I think most people will tell you this is common to have a stronger reaction after you've been off of it. My doctor told me even the foods I'm allergic to will make me extremely sick after I stop eating them because your body gets used to constantly having that allergen, so it has a certain tolerance, but when you eliminate the allergen, then say a few months later eat it again, your body will have a much stronger response to it. So yes, symptoms do get worse after you've been away from the food for a while, then try to eat it again.

jerseyangel Proficient
So I've had intermittent digestive problems for at least 20 years, and had tentatively decided at the very least I had a problem with dairy, so I ate it in tiny amounts and not every day. I didn't think of gluten because I wasn't underweight; in fact, I was 20 lbs, too heavy and no matter what I did I couldn't lose it. I'm not totally sure, but I'm thinking my own "trigger" might have been a surgical procedure I had 6 years ago for uncontrolled bleeding....I lost so much blood I got horribly anemic, could barely walk and nearly had to have transfusions it was so bad. I had general anesthesia with a D&C to correct the situation, which it did. However, the whole thing was somewhat of a trauma and it took me several weeks to feel better and get the iron levels back up to normal. In retrospect, I think my digestive woes have been getting progressively worse since then.

Wow--I could have written this part of your post :o . The only difference is that I had my procedure done in 2004. It was after this that my Celiac came on full force. I just wrote about this in another thread, but in my case , the reactions I get from gluten now do seem worse than they were before. Its a little hard to compare, though, because before DX, I was sick all the time--it was more a matter of how sick on any given day. Now that I feel well most days, if I get any gluten, the reaction is more clear cut and seems more powerful. How is your anemia now? Before DX, my red blood ct. was 8, after 6 months gluten-free, its now 14.5! Its nice to have color in my face and not bruse from resting my arm on a table.

glutenboy Newbie
It did for me. Even though I was really, really, really sick for almost 2 months before starting going gluten-free, since then anytime I've cheated the pains are worse, regardless of how little or much gluten exposure I have.

I'll agree with this too. Even just being mostly gluten free for about 3 months, now every time I get any gluten (like malt vinegar in salad dressing), the results are pretty horrific.

CMCM Rising Star
Wow--I could have written this part of your post :o . The only difference is that I had my procedure done in 2004. It was after this that my Celiac came on full force. I just wrote about this in another thread, but in my case , the reactions I get from gluten now do seem worse than they were before. Its a little hard to compare, though, because before DX, I was sick all the time--it was more a matter of how sick on any given day. Now that I feel well most days, if I get any gluten, the reaction is more clear cut and seems more powerful. How is your anemia now? Before DX, my red blood ct. was 8, after 6 months gluten-free, its now 14.5! Its nice to have color in my face and not bruse from resting my arm on a table.

You know, I haven't been tested for anemia in years. But I really bruise easily, so given the connection that seems to exist between anemia and celiac disease, I probably sholuld get tested! I never thought of it.....I improved after the surgery by taking iron pills for a couple of months, and I stopped looking like a ghost fairly quickly, so it never occurred to me.

jerseyangel Proficient

CMCM--After my surgery, I was also on iron suppliments that I had started before the procedure. When I stopped them and just took a multi. with iron, I started to have the symptoms of anemia again. That is also when my Celiac kicked in, like I said before, and it leads me to believe that the Celiac was the main cause of the anemia and the monthly blood loss was a contributing factor. This opinion is shared by my GI Dr. who told me that we'll never really know either way. My suggestion would be for you to persue the gluten-free diet and try it 100% for a month. Go back to the basics--meats, fish, veggies, fruits, olive oil, nuts--to help you feel better and see how you feel then. Getting you blood levels checked would be a good idea, too. The gluten-free diet got rid of my anemia--the suppliments were only treating the symptoms.


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



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star
You know, I haven't been tested for anemia in years. But I really bruise easily, so given the connection that seems to exist between anemia and celiac disease, I probably sholuld get tested! I never thought of it.....I improved after the surgery by taking iron pills for a couple of months, and I stopped looking like a ghost fairly quickly, so it never occurred to me.

I get check for anemia every 2 months (or I did for a year, anyways). I have all the symptoms of it, but dont have it. When I go to a doctors appointment tomorrow I'll make sure I get a new form for the bloodwork again. It never hurts to be tested for that, thats for sure.

~lisa~

julie5914 Contributor

I has been my experience that the reactions are stronger now with accidents. No more bingeing! That is SO bad for you! I was anemic before going gluten-free (hemoglobin 10/hemotocrit 30)- I just got my CBC last week and my hemoglobin was 13 and my hemotocrit was 41! That's higher than ever! Yay! In addition, my ferritin was within range, which brought up the distribution numbers and made it so there wasn't one flag on the whole CBC! One day I will get my celiac panel to look like that.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.