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

Non Celiac - But Are These Symptoms?


Mo92109

Recommended Posts

Mo92109 Apprentice

A Dr. told me that I was wheat intolerant and to go on celiac.com for more information. I got the awful biopsy done and do not have celiac, though. I've had some dr's tell me that I can have bread, as long as it's not wheat and that non-wheat beer is ok too. I did my own research and decided to be gluten-free altogether and have been for 6 months. Now, if I accidentially eat something (usually flour hidden in something) I get really itchy all over and sneezy - a symptom that has never happened before. Before, it was stomach and bad bowl problems and horrible heartburn (is that related, or is that something else?) Even though I do feel better for the most part, I still have a bloated stomach (I am very thin everywhere else) bad heartburn (I'm on two different prescriptions) and have embarrassing gas almost all the time. Another thing I noticed within the past year is that I can't remember anything... turned into a real dope.

Any of this sound like Celiac or is there something else wrong with me? Isn't wheat intolerant the same as gluten intolerant? Any feedback would be appreciated.

Thanks!


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Did you have bloodwork done or just the biopsy? A negative biopsy doesnt mean you dont have Celiac.

Mo92109 Apprentice

The boolwork said I was "wheat intolerant" according to my Dr.

Is there something else?

Rachel--24 Collaborator

Yeah...there are specific tests for Celiac. I'm thinking you didn't have those tests if they told you that you're wheat intolerant. <_<

Gluten intolerance is more than just avoiding wheat. I think they are giving you wrong information. :unsure:

Mo92109 Apprentice

Are all those things (gas, memory, heart burn) associated wth gluten intolerance/celiac or can it be something else caused by celiac?

So confused.

Rachel--24 Collaborator

Yes, those can all be symptoms of Celiac/Gluten Intolerance.

The brainfog/memory problems were one of my worst symptoms. If you are still having these symptoms after 6 months you are probably not completely gluten-free....assuming you are Celiac or gluten intolerant. Those symptoms could be caused by other things as well so you would need to be very diligent on the diet to know for sure...it sounds to me like you're probably not 100% gluten free.

falwell57 Newbie
A Dr. told me that I was wheat intolerant and to go on celiac.com for more information. I got the awful biopsy done and do not have celiac, though. I've had some dr's tell me that I can have bread, as long as it's not wheat and that non-wheat beer is ok too. I did my own research and decided to be gluten-free altogether and have been for 6 months. Now, if I accidentially eat something (usually flour hidden in something) I get really itchy all over and sneezy - a symptom that has never happened before. Before, it was stomach and bad bowl problems and horrible heartburn (is that related, or is that something else?) Even though I do feel better for the most part, I still have a bloated stomach (I am very thin everywhere else) bad heartburn (I'm on two different prescriptions) and have embarrassing gas almost all the time. Another thing I noticed within the past year is that I can't remember anything... turned into a real dope.

Any of this sound like Celiac or is there something else wrong with me? Isn't wheat intolerant the same as gluten intolerant? Any feedback would be appreciated.

Thanks!

<{POST_SNAPBACK}>


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



Celiac.com Sponsor (A8-M):



Mo92109 Apprentice

Wow, thank you... I guess I need to be educated better. Lots of info on this site I am collecting and I have an appointment to have a sonogram on my pelvis and abdomen to check out the bloating.

Thanks again, it is nice to know that maybe I am NOT getting stupider.

gfsimon Newbie

I have all these things you listed and my blood test is where it showed up not in the biopsy so my doctor wanted me to go on gluten free diet I have and I am much better - I can even think better, but I have trouble with mouth ulcers everytime I accidently eat gluten, my mouth breaks outs - do you have this problem? I understand that wheat intolerant is the same as gluten intolerant. It is all so new to me, but I do feel better since I have been on the gluten free diet. Gwen

A Dr. told me that I was wheat intolerant and to go on celiac.com for more information. I got the awful biopsy done and do not have celiac, though. I've had some dr's tell me that I can have bread, as long as it's not wheat and that non-wheat beer is ok too. I did my own research and decided to be gluten-free altogether and have been for 6 months. Now, if I accidentially eat something (usually flour hidden in something) I get really itchy all over and sneezy - a symptom that has never happened before. Before, it was stomach and bad bowl problems and horrible heartburn (is that related, or is that something else?) Even though I do feel better for the most part, I still have a bloated stomach (I am very thin everywhere else) bad heartburn (I'm on two different prescriptions) and have embarrassing gas almost all the time. Another thing I noticed within the past year is that I can't remember anything... turned into a real dope.

Any of this sound like Celiac or is there something else wrong with me? Isn't wheat intolerant the same as gluten intolerant? Any feedback would be appreciated.

Thanks!

<{POST_SNAPBACK}>

falwell57 Newbie

Maureen - I have been gluten-free since Feb. and have learned so so much from reading other people's posts. (I often just want to read all day long to learn more.) Since April, I have become reactive to lactose/casein, and now, most likely caffeine. It makes me have "holes" in my brain power. I can't focus on tasks, organize things, do numbers of any kind (simple adding and subtracting), or get anything done at all. I cannot work anymore, and for a while, I couldn't even work the cash register at our home-owned business. I still do not feel really great, like I did the first 2 months after going gluten-free. I have learned that now that gluten isn't a problem, all the other things that my body has developed sensitivities to are taking their turn making me feel bad. So, unless I get the food sensitivities tests done soon, I will just go back to bare basics and add one thing in at a time. I have read that corn, soy, peanuts, glutamates (MSG), aspartates, and all artificial sweeteners are things that celiacs can easily be sensitive to, especially if it has gone undiagnosed for many years like me - over 40 years till diagnosed. Who knows, the food tests might save me a lot of time of trial and error. If you haven't read it, read The Answer by Dogtor J at www.dogtorj.com It has some interesting information.

BTW - once I got completely OFF the caffeine - tea, coffee, sodas, etc. I can at least "think" again. All I drink is water. Good Luck, Jan

Claire Collaborator

Doctors as well as patients get the wheat and gluten thing mixed up.

Gluten is a protein found in wheat, barley and rye. The protein of oats is different but must oats in the US is too gluten contaminated to be safe to eat. Gluten is used in thousands of common products. I saw the other day a statement that 90% of the food in the supermarket contains gluten.

There are people who are allergic to wheat but it is too easy to misidentify the problem,

15 years ago when Celiac was thought to be rare and little research had been done, I was told that i had a Type II, Delayed Food Reaction to all grains except rice and oats. Not one word about gluten. I stopped eating bread and the other flour fillled products but made no attempt as such to avoid gluten. I got remarkably better but still had problems. Only this year did I make the gluten/celiac, Delayed Food Reaction connection. Rather late as I now have neurological problems either caused by or aggravated by the small amount of gluten I was getting.

Get the gluten out before it does you more harm than you want to deal with. Get some tests done and resolve the issue - for certain.

Take care of you. Claire

Mo92109 Apprentice

Thanks everyone. This sucks.

This forum realy helps so much!

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
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    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.