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

Just A Wheat Allergy?

splash

Recommended Posts

splash Rookie
splash
Posted

My doctors diagnosed me with celiac even though my blood IAg and DNA tests were both negative. My symptoms all my life have been so numerous, and were so drastically improved once gluten free, that it just made sense. But is it possible that I just have a wheat allergy, and (more importantly!) that maybe I can have some good old barley based beer?

I'm afraid to test it out since I get so sick for days with GI problems, heart racing, brain fog, and skin problems when I get mistakenly glutened. And I know from this site that the DNA test in the US can't rule celiac out 100%. Is it possible though that an allergy could cause those things and that I don't have celiac? Will my GP or GI drs be able to test me, or should I see an allergist? I haven't tested myself with barley or rye since I went gluten free last summer.

No offense to Redbridge, but it's not quite the same... I'd love a big glass of Guinness stout!!

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

Well, as you yourself have said, the tests are unreliable. Only one sure way to know, so it's up to you. Sorry, I don't know what else to suggest.

tarnalberry Community Regular
tarnalberry
Posted

there's not much you can do other than test it dietarily. an allergist will look for IgE allergies, not IgG intolerances. you may have a negative IgA, and still have celiac, particularly if you're IgA deficient (not uncommon in celiacs), and the DNA tests don't cover 100% of celiac cases).

your symptoms sound pretty classic celiac, and not very much like an allergy. they *might* be wheat intolerance based, but they sound more celiac. if you want to test it, though, I'd suggest going out, getting some barley groats, cooking them up for dinner, and having a nice big bowl, and seeing how you feel. you may heartily regret it for weeks, or you may get to drink guiness again.

splash Rookie
splash
Posted
  • Author

Thanks for the replies. I guess even if I did have an allergy, that wouldn't rule celiac out - I might have both. Maybe I'm just going through stage #24 of celiac diagnosis: Denial due to severe temptation to drink Guinness! For those in the earlier stages, this apparently occurs about 8 months after you first give up gluten ;)

Maybe I should just try having a few sips of beer. Tomorrow is a holiday, after all...

dbmamaz Explorer
dbmamaz
Posted

I tested negative for celiac, but tested allergic at the regular allergist to wheat, barley and malt . . .no wonder the gluten-free diet helped so much :lol:

You could try eating barley . . .or yeah, just try the beer lol.

tarnalberry Community Regular
tarnalberry
Posted

there are a number of other gluten free beers to try (none are cheap :/). perhaps one of them - while never your old beloved - will become newly appreciated?

splash Rookie
splash
Posted
  • Author

Well, last night I had a half a bottle of beer. As good as it tasted, I was nervous and couldn't bring myself to drink the whole thing. But... nothing happened. If that had been a cracker I would have been running to the bathroom within minutes, my heart would be pounding and I'd be waking up feeling terrible. But it seems like I'm fine! I am pretty much in disbelief. Maybe the reaction to barley is different that wheat somehow and I'll have symptoms later?

But this would explain all my negative tests if I just have a wheat allergy. Why didn't any of my doctors think of this??

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Actually, it depends some on how long you have been gluten-free. Your gut may have healed since last summer, and then you might not react to gluten as you once did. For some of us, it takes a while to do damage.

When was the last time you had a reaction to accidental gluten?

Not trying to burst your bubble, just don't want to see you damage yourself unnecessarily.

You might try a cracker and see if you have that instantaneous reaction--but if you don't, I wouldn't think that you're cured, just that your gut has healed and is not (yet) reacting.

If you do react to the cracker, then you might be right, and maybe it is a wheat allergy, not celiac, but gee, that does seem awfully unlikely (though still possible).

I'm not a beer drinker, but I'd start trying all the sorghum based beers before rocking the boat.

splash Rookie
splash
Posted
  • Author

I do see your point. I don't want to do any long term damage either. A couple of weeks ago I ate at a restaurant in DC called Utopia, and the waitress just plain didn't understand what I was talking about when I asked about gluten. I had a portabello pesto dish that caused my insides to explode within about 30 minutes. I felt like a skeleton for two days and it took a few more for me to have a meal without my stomach growling back at me. And that's probably from a portion of wheat flour that was a tiny fraction of the amount of barley in the beer I had last night.

I have joked that I'm like a gluten-detecting robot, because if the tiniest amount creeps into my meal, even from using an iron skillet once used for pancakes but thoroughly washed, I will feel it. I really don't want to test out the cracker. So this beer thing is quite weird. Has anyone else experienced different reactions to different kinds of gluten?

I have tried quite a few sorghum beers - there are some Belgian sorghums that are decent. The truth is that I'm a bit of a microbrew afficionado, so this has taken a pastime from me, not to mention that some of the places I frequest with my friends have enormous choices of beer, none of which are gluten free, and the only wine offered tastes like vinegar. I've been drinking cider mostly, even though the alcohol content gets me tipsy a little too quickly! And sharing pitchers is out.

I can live without beer if I have to, I'm not trying to design my own disease, I just want to get to the bottom of this!

ravenwoodglass Mentor
ravenwoodglass
Posted
I do see your point. I don't want to do any long term damage either. A couple of weeks ago I ate at a restaurant in DC called Utopia, and the waitress just plain didn't understand what I was talking about when I asked about gluten. I had a portabello pesto dish that caused my insides to explode within about 30 minutes. I felt like a skeleton for two days and it took a few more for me to have a meal without my stomach growling back at me. And that's probably from a portion of wheat flour that was a tiny fraction of the amount of barley in the beer I had last night.

I have joked that I'm like a gluten-detecting robot, because if the tiniest amount creeps into my meal, even from using an iron skillet once used for pancakes but thoroughly washed, I will feel it. I really don't want to test out the cracker. So this beer thing is quite weird. Has anyone else experienced different reactions to different kinds of gluten?

I have tried quite a few sorghum beers - there are some Belgian sorghums that are decent. The truth is that I'm a bit of a microbrew afficionado, so this has taken a pastime from me, not to mention that some of the places I frequest with my friends have enormous choices of beer, none of which are gluten free, and the only wine offered tastes like vinegar. I've been drinking cider mostly, even though the alcohol content gets me tipsy a little too quickly! And sharing pitchers is out.

I can live without beer if I have to, I'm not trying to design my own disease, I just want to get to the bottom of this!

The gluten response is often delayed. What I would reccommend is drinking a guiness at least once a day for a week. If you last a week. For many it can take a few days before the reaction is seen. The fact that you are so apprehensive to a full gluten challenge is quite telling, IMHO.

HAK1031 Enthusiast
HAK1031
Posted

I think different types of gluten can affect people differently. Surprisingly wheat is not so bad for me. If I have that accidentally, I might be in the bathroom for a little while but I'll be better in less than 24 hours. If I have barley, however, I'll be out of sorts for a week. The sickest I ever remember being involved a lunch of soup with barley and a lunch with rye bread :o

But I agree with everyone else- no reaction (for now) doesn't mean you don't have celiac

splash Rookie
splash
Posted
  • Author

As much as I would love to have Guinness for a week, it looks like it didn't take more than half a beer after all. I haven't had any skin problems since going gluten free, but last night I started to get a bunch of blisters on my hands and I'm not entirely GI-comfy right now even though that didn't come on all at once like it would with wheat. What I had the other night was an Avery IPA, which has no wheat in it, just barley and hops. Man it tasted good. But, alas, I don't think I'll try it again. Funny that the symptoms for different kinds of gluten are so different!

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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748
    VanessaC
    Newest Member
    VanessaC
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.