Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

thezoo17

Just A Wheat Intolerance, Can This Not Be Celiac Disease?

Recommended Posts

HI everyone,

I am hoping someone here can help me, I am so confused. I had some blood test done through Immuno Lab through a Holistic dr for Delayed Food Allergies and it came back with me allergic to Wheat, yeast and eggs however not Barley or Rye.

Then on the Gluten Antibody Assay my IgA was 21 units (20 -30 units being weak positive). So the dr. told me that I am allergic to wheat but I do not have celiac disease. My IgG was negative and so was my tTG.

I have been staying away from gluten for about a year or so now and sometimes I screw up and accidentally eat something containing wheat and then I suffer for about a month.

I guess it doesnt really matter to me if I am celiac I just dont understand my symptoms. Here they are:

When injesting wheat, the next day or before I get extreme Gas trapped in my entire left side and I get totally stopped up. I have to push on my intestines to get any gas to come out but it never feels better, and I am also very nauseated during this time so I do not or cant eat anything it seems like it just sits on top of the bad wheat that is in there and makes me worse. Then after the gas has finally let up, I am still constipated (pretty all of the time in my life I am constipated) but if I eat anything during this time, alittle bit will escape but it will not be digested at all.

After the week of the extreme gas trapping, I get a Huge crack on both sides my lips, sorta like a cold sore but it is just cracked and hurts. Then I get an extremely sore tongue, my taste buds are all raised and sore, and I get blister like things on my gums and also nothing taste right and this last for about 2 more weeks.

So it seems like when I have eaten anything with wheat in it I get sick for about a month. Does this sound familiar to anyone. I am just worried that it is something else and I am wasting my time with thinking its a wheat allergy.

About 2 weeks ago I ate some McDonald french fries thinking they were wheat free until I started to feel the gas coming later the next day so I went to their website and found out that they werent wheat free and I am getting the sore tongue and bad taste. It all seems like it adds up to the wheat but I just dont understand how I could be allergic (or intolerant) to wheat and not Barley or Rye.

What are your opinions and what would you do?

I am miserable at the moment, and really need your help.

Thank you all so very much for listening and thanks for any feed back you can offer or suggestions.

Joyce

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


what happens when you eat Barley or Rye?

Did you have the tests after going gluten free?

I would not eat wheat ever again.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

Share this post


Link to post
Share on other sites

sounds like your tests were done after a long time gluten-free except for the occasional slip-ups.

Happened to me too, I was accidentally gltuen-free because I was low-carb and then had tests because I got so sick from gluten at family meetings and it was of course negative.

The tests are calibrated to onlly show up positive with wuite severe villi damage and you have to have eaten a lot of gluten for a long time for the tests to be positive.

One test was weakly positive.

Yes, your symptoms are typical. I had some cracks and cold sores on glutent hat completely went away off gluten too. Constipation after glutening - I have that too.

I am not diagnosed but ddaughter is.

You could be celiac.

Your test results will be negative off gluten.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites

Have you ever tested if barley and rye make you sick? It is obviously pretty simple to find out. After you feel better again, eat some rye bread (Ryvita crisp bread would be good, it is 100% rye) for a few days. If you react, you can be pretty sure it is gluten. But if you still want to try barley, drink some beer or eat soup that has barley.

If you don't react to rye and barley, it is just the wheat (which is bad enough). If you react to those, then it is likely celiac disease.

And yes, your symptoms could very well be celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites
what happens when you eat Barley or Rye?

Did you have the tests after going gluten free?

I would not eat wheat ever again.

Hi Fedora, Ursa, Nora and Aiki,

Thank you all for responding! You know what I am not even sure I have ever had Barley or Rye. I guess I will go

buy some rye bread and check it out. As far as the Barley, I know that I hate beer but its been many many years

since I have had some so I am sure if it bothers me or not. But I do remember in the past it totally me my stomach bloat.

Very interesting!

No, actually I had the test done in the mist of a major flare up. I was sick a year before I went to see the Holistic dr. but it pasted after several months only to come back worse so I went to see this dr and as soon as he saw me and listened to my symptoms he told me it was something I was eating every day that I was allergic too.

I thought he was crazy, I didnt eat the same things everyday, but never thought about bread..Duh!

I do not plan to eat wheat ever again, but when I do accidentally injest some I was just wondering if all of my symptoms were because of the wheat, because they sure are intense (feel like I have the flu for about a month).

It seems like after my stomach finally starts to feel better, the brain fog and extremely sore tongue last for about 2 more weeks. It just seems like an extremely long time for such symptoms from wheat.

What do you think?

Thanks again all!

Joyce

Share this post


Link to post
Share on other sites
. ...You know what I am not even sure I have ever had Barley or Rye. I guess I will go

buy some rye bread and check it out.

Noooooooooooooo . ..rye bread is still mostly wheat. :ph34r:

To check rye, maybe the rye crackers that were mentioned as all rye.

For barley, I'd guess a wheat-free beef&barley soup - if there are some.

Or for lesser amounts of barley, a non-wheat beer, or something w/ barley malt, e.g. Rice Krispies, tho the soup or something else w/ more barley should be a better test, I would think.

Considering that barley malt (or malt flavoring etc) is in so many things, it'd be good to know whether it's a problem, tho I hate that I'm actually recommending doing a test that may knock you down for a month. :(


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

Share this post


Link to post
Share on other sites

Having symptoms for a few weeks from accidental wheat is not too odd if you indeed have celiac. There are people here on the board who take up to a month to recover from an accident.

You can come across barley malt in things like corn flakes, could be that if indeed you are also sensitive to barley, and you haven't been checking for that, that it might have prevented you from getting 100% better, who knows?

happy hunting. :)

Pauliina

Share this post


Link to post
Share on other sites

Barley is available all by itself, as it is a common ingredient for soups and such. However, I wonder if there would be contamination from wheat. Rye berries are also sold plain, though I suppose not as common as barley. Again, CC from wheat may still be a problem.

I wonder if a skin reaction test would work. Like cook some barely in water, dip a cotton swab in it, and dab onto the skin. Isn't it common for allergists to test for things by dabbing them on the skin and watching to see if the skin reacts?


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

Share this post


Link to post
Share on other sites

I once had a skin prick test and they put a drop of each allergen on my skin, I think it was the arm, and then pricked through each drop with a new tiny tiny lancet. They have to break the skin a little bit. This testing is very unreliable but if one gets a reaction it means something. I got no reactions at all except for the one drop of histamine that was a control. I think they check the reactions the next day.

I think one can use a clean utensil and smash a barley grain and a rye grain and a wheat grain (they look different) and one can wash them first, as the threshing machine has wheat residues if not washed thoroughly. I react to tiny residues of wheat so washing would help.

Just a theory , and one would only get a reaction if there is an IgE reaction. (normal allergy)

Note there are IgG reactions too, and IgM.

There are tests for IgG and IgM food reactions, by the way.

And, there is an antigliadin IgG test and IgA test. The antigliadin tests are somewhere between allergies and celiac I heard. Celiac is purely autoimmune.

And, some celiacs violently react to oats.

I can have oats.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites

I was diagnosed with a delayed food allergy by a holistic MD too--I was found allergic to gluten, wheat and brewer's yeast(which is weird since I don't drink). He didn't bother doing an IGA, as I reacted pretty strongly to the IGG. You just may not be allergic to gluten--the common denominator between wheat, rye and barley. I don't know about Mcdonalds, but the french fries were probably dusted--and I believe they fry them in the same oil they use for the hash browns. Unlike you I get nerve pain from eating gluten and wheat, but I also do get cracked lips, and have some digestion issues--stools become uneven(harder and then looser), and I feel like I digest less, I have anxiety. Symptoms can range the spectrum. I'm still discovering symptoms that I can attribute to eating gluten.

My advice, if it makes you hurt, just don't eat it. The pain isn't worth it, especially seeing as your symptoms last so long if you cheat or mess up.


Diagnosed with Carpal Tunnel/Thoracic Outlet Syndrome 01/06

Diagnosed with TMJ/07

Diagnosed with blood test to gluten, wheat and brewer's yeast delayed food allergy 01/08.

Gluten free since 01/08.

Diagnosed with Vitamin D insufficiency 01/08

Diagnosis of Carpal Tunnel/Thoracic Outlet Syndrome repealed and attributed to gluten allergy 1/08

Diagnosed with Candida 03/25/08

Share this post


Link to post
Share on other sites