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Atypical Symptoms -- Not Sure If It's celiac disease

shadowfax

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shadowfax Newbie
shadowfax
Posted

Hi,

A few years back, I was diagnosed with Leaky Gut syndrome and food allergies (including wheat and gluten) after a bout of food poisoning. After a strict diet for a few months, the brain fog lifted and I introduced foods back into my diet as instructed by my naturopath. I'm MUCH better now, but the past year or so I've had odd symptoms that I'm not sure relate to celiac disease. Here's a description of a really bad event for me:

I start to feel reeeeally tired, then sort of heavy (as if just stepping out of a pool), then I get a sick, hot feeling all over, my heart starts to sky-rocket and I start to sweat. I endure this for about 15 minutes, and then I have a bowel movement. This may sound odd, but it's almost like my body wants to throw up, but on the other end...but it's not diarrhea. It sometimes feel like my intestines just stop working and this is my body's way of trying to jump start it again. It's a truly horrible and terrifying experience...I feel like I'm dying or something.

I've been avoiding wheat and gluten for the most part for the past 2.5 weeks and so far so good. If it stays calm for the next month I feel it must be due to the wheat/gluten. But it's frustrating because I don't seem to have typical, cut and dry celiac disease symptoms. Can anyone relate?

Also, how reliable are the blood tests for celiac disease? I don't think I can handle or afford a biopsy.

Thanks for listening!

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Guhlia Rising Star
Guhlia
Posted

This is EXACTLY what happens to me if I do a gluten challenge. I thought I was crazy, but you've really hit the nail on the head. I'm glad I'm not alone, but I'm so sorry that you have to go through this. On my last gluten challenge, when I was supposed to get biopsied, it took me about 5 weeks of eating gluten to reach this point. I'm one of those who gets sick over just a crumb, but if I eat a whole slice of pizza I get no reaction, my body just kind of shuts down. Ugh... Anyway, yes, that could definitely be Celiac rearing its ugly head.

Viola 1 Rookie
Viola 1
Posted

The blood tests are pretty reliable if you have been eating gluten before the tests. If you have been gluten free they would likely give you a false negative.

Let us know how things go, and welcome to the forum!

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      how much gluten do I need to eat before blood tests?

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    • catnapt
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      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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