Is My Husband A Celiac? He Will Die If He Eats Wheat!

[frustratedpenguin]

My husband cut out eating all gluten in October. His IBS, GERD, and rheumatoid arthritis completely went away. In January, he snuck a piece of pizza and the next day he had gas like he ate 50 cans of beans, and diarrhea. Then a few days later his knee swelled way out and he could barely walk, as well as swelling in all of his knuckles. This subsided after a week or so, and then he was fine again. 

Then in May, we tested eating Einkorn (a form of wheat), and 14 hours later he began vomiting, had diarrhea, severe stomach pain, turned gray, and started fainting. I called an ambulance and he said that his blood pressure was really low so they rushed him in, monitored him, and gave him fluids. They did blood tests to make sure it wasn't gastroenteritis. I kept telling them it was the wheat. 

Also, if he eats even Worcestershire sauce, his knuckles will swell (barley malt). Though we haven't tried that since before May. Not sure how severe it will be now. 

While he was still eating wheat (before October), he was tested with the anti-ttg-iga test 3 times in the last several years. All 3 times were negative. 

Then, a couple of weeks ago, I fed him something new. Amaranth. About 10 hours later he started vomiting, had diarrhea, severe stomach pain, turned gray and started fainting again. Luckily, he begged his allergist for an Epi-pen just in case, and so I gave that to him and called an ambulance. The colour started coming back to his face and he started doing a little bit better. They still needed to bring him to the hospital. 

He does not get hives during these reactions. 

What on earth is going on?! Does he have Celiac Sprue? There is NO WAY he will be able to do a food challenge. He cannot ingest that stuff anymore. And I have been doing a lot of reading on cross-reactive foods where the body thinks it's gluten when it's not. Amaranth is one of those foods. But the blood tests that Cyrex Labs will only pick up on it if you're actually ingesting those foods. He's wayyyy too scared of eating Amaranth again. 

Scratch tests are nice for IgE allergies like with peanuts or whatever because you can be tested without eating it. 

So how on earth is he going to be tested for these things?! We find that if he eats gluten, soy, sesame, and now possibly amaranth it will send him to the hospital. Please help!

[Mum in Norway]

Well, he obviously can't do a gluten challange, so there is no way of getting a reliable blood test for celiac done.

Non-celiac gluten intolerance is hard to diagnose, and also involves gluten challange.

As far as I know the only thing you can do at this point is to have gastroscopy. Even now that might still come back positive if he has celiac, but if it's negative, that realy doesen't meen anything. Some people get negative blood tests and positive gastro, and it can take a long time for the intestine to fully heal.

But there is absolutly no doubt he needs to be totaly gluten free, so maybe diagnosis is not so important?

[shadowicewolf]

Well, he obviously can't do a gluten challange, so there is no way of getting a reliable blood test for celiac done.

Non-celiac gluten intolerance is hard to diagnose, and also involves gluten challange.

As far as I know the only thing you can do at this point is to have gastroscopy. Even now that might still come back positive if he has celiac, but if it's negative, that realy doesen't meen anything. Some people get negative blood tests and positive gastro, and it can take a long time for the intestine to fully heal.

But there is absolutly no doubt he needs to be totaly gluten free, so maybe diagnosis is not so important?

you mean endoscopy right?

[bartfull]

It sounds to me that he is having ALLERGIC reactions rather than celiac reactions. Turning gray and having the epi pen help seem to point to that. He may also be allergic to amaranth.

[psawyer]

It sounds to me that he is having ALLERGIC reactions rather than celiac reactions. Turning gray and having the epi pen help seem to point to that. He may also be allergic to amaranth.

My thoughts as well.

[frustratedpenguin]

The reason why I brought up the Cyrex cross reactive blood tests (Open Original Shared Link) is because he gets swollen joints several days later from coffee & chocolate, which are also common cross reaction foods. There are foods where your body thinks it is gluten when it's not. I just wish there was a way to do tests without consuming the offending food, just like the IgE scratch tests can be done without consuming the offending food.

 

Diagnosis is important because there could be other foods out there that will do this to him that we don't know about and we don't want this to happen again (ie, the possible amaranth). Also, diagnosis is important because we need to know what condition he has so we can treat it properly. Avoiding gluten is good, but we need to get everything out of his diet that might be contributing to high antibody levels in his body. Then hopefully if he accidentally gets "glutened", then his body won't freak out as much as it is.

 

I hope that makes sense...

 

Also, we have been waiting over a year to see a gastroenterologist to get an endoscopy. In Canada, you have to wait ridiculous amounts of time. It's a trade-off for our "free" (not actually free, we just pay wayyyyyyyyyyyyyy more taxes than you for government insurance) healthcare. So we're still waiting...

 

Bartfull, can an "allergy" (ie, anaphylaxis) really be delayed as long as 14 hours?

[kareng]

As serious as your husbands issues seem to be, I have to wonder why you want to go "the self-diagnosis with unproven internet tests" route? 

 

I think there may be some legitimate "cross-reactivities" with allergies but that wouldn't apply to Celiac as there is no scientific evidence for that.

 

 

Open Original Shared Link

 

Open Original Shared Link

[bartfull]

When I had an allergic reaction to oysters (doctor confirmed), it was about eight hours. USUALLY an allergic reaction happens almost immediately but not always.

 

OR, it could just be a coincidence and he was having an allergic reaction to something in the environment. If the epi pen helped, it must be an allergy. As far as I know epi pens do nothing for intolerances or autoimmune diseases.

[frustratedpenguin]

Bartfull,

 

It certainly wasn't anything else but the Einkorn. The only IgE allergy he has is to shrimp. But it only gives him hives. And he didn't eat any. The night before he had food for supper (uncontaminated and made from scratch) that he always eats, and then at about 10pm he purposely tried the einkorn to see what would happen.

 

In the morning when he woke up, he had one slightly swollen knuckle. We had for breakfast foods we always eat (homemade from scratch English muffins, eggs, and fruit), and then at about 11:40am (before he ate lunch) he felt like his stomach "dropped" ran in to the bathroom because he knew a bout of diarrhea was starting (he also started getting the stomach pains), and then he started vomiting profusely. Then he turned gray and started fainting.

 

We knew that the swollen joints would come in full force within the next few days, and sure enough they did. So it wasn't a coincidence.

 

Kareng,

 

I beg to differ regarding the cross reactive foods. Here is a link to a peer reviewed article from Food and Nutrition Sciences which was published in 2013. It was received on August 22nd, 2012; revised on December 6th, 2012; and accepted December 13th, 2012: Open Original Shared Link

 

Another interesting one is this peer review article which challenges the so-called "gold standard" of the anti-ttg-IgA test: Open Original Shared Link (the pdf can be found here: Open Original Shared Link

[psawyer]

I beg to differ regarding the cross reactive foods. Here is a link to a peer reviewed article from Food and Nutrition Sciences which was published in 2013. It was received on August 22nd, 2012; revised on December 6th, 2012; and accepted December 13th, 2012.

Umm, no link...

[frustratedpenguin]

Umm, no link...

Oops. I edited my post and added the link in. 

[Bear with me]

From the linked site:

The consumption of cross-reactive foods as well as gluten-contaminated foods may be responsible for the continuing symptoms presented by a subgroup of patients with coeliac disease. The lack of response of some celiac disease patients may also be due to antibody cross-reactivity with non-gliadin foods.

That does not sound like a definitive conclusion. Like many new peer-reviewed studies, it indicates that more studies should be done to see if the result is consistent across multiple studies. Just my thought, FWIW.

[frustratedpenguin]

From the linked site:

That does not sound like a definitive conclusion. Like many new peer-reviewed studies, it indicates that more studies should be done to see if the result is consistent across multiple studies. Just my thought, FWIW.

Thanks. But just FYI... I know that in the case with the amaranth, nothing was contaminated with wheat. All the flours that I used I had previously used in a bread loaf that I made several days before. The only thing new that I added (because i had run out of the sorghum flour that I was using) was amaranth. Which was not even bought in bulk. It was a packaged flour from a gluten free facility.

[pricklypear1971]

I can't remember the name for it but there's a condition (help me here people) where you can have drastic reactions to a certain group of foods (cant remember the name), and glutenous grains are a big chunk if that group. Isn't it the condition that Fasano said can be mistaken for gluten intolerance?

I know there's a post. I'll dig for it. It's a differential Dx for Celiac/NCGS.

Ok, try this link for differential: Open Original Shared Link

Okay, thanks to kareng here it is: Open Original Shared Link

It's FODMAP sensitivity.

[frustratedpenguin]

I can't remember the name for it but there's a condition (help me here people) where you can have drastic reactions to a certain group of foods (cant remember the name), and glutenous grains are a big chunk if that group. Isn't it the condition that Fasano said can be mistaken for gluten intolerance?

I know there's a post. I'll dig for it. It's a differential Dx for Celiac/NCGS.

Ok, try this link for differential: Open Original Shared Link

Okay, thanks to kareng here it is: Open Original Shared Link

It's FODMAP sensitivity.

Thank-you pricklypear1971!!!

 

I agree with the link you gave me. A diagnosis IS important. But it's frustrating because he absolutely, positively cannot eat gluten. He has been eating it his entire life, but he certainly can't eat it now. Actually, he has been quite sickly his entire life, asthma, gets the flu multiple times a year every year, etc. He has even been getting pneumonia every year for the last 4 years. And his vitamin D levels were extremely deficient.

 

I will look into FODMAP and take that to our doctor as well. I have been having to also pay attention to my 1 1/2 year old daughter as well. When I introduced cow's milk, she started getting horrible diarrhea, rashes, and wheeziness/stuffiness. I took her off and she is fine. Then I noticed that whenever I would give her gluten, (which was once a week at church because I would feed her whatever everyone else was eating there at the potluck when the rest of the week I cooked gluten-free for my husband and whole family) and the next morning her diaper would practically shoot off her with the most horrible diarrhea. I took her off the gluten and now she is fine too! So that is why I was thinking celiac. It seems my daughter is running into some similar problems with gluten/autoimmune/allergies.

 

Oh, and I thought this seemed interesting as well. Might explain why people feel better with the Paleo diet: Open Original Shared Link

[pricklypear1971]

Oh, I don't suggest going back on gluten!! Nope nope!

If it quacks like gluten, it's probably gluten...and in your husbands case...sounds like allergic involvement, too.