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My Doc Thinks I Have Celiac

Lena

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Lena Newbie
Lena
Posted

Hi everyone...

My doc thinks I have Celiac...but is ruling out other things first (had me do the "sample" thing ukkk).

Symptoms:

Over past few years "attacks after eating and middle of night of bloating, extremely painful cramping, sometimes diahrea...doesn't start that way but ends up being. Last month it was so severe they sent me to the ER thinking I had appendicitis.

So, my primary care doc says he thinks I have Celiac...I research it online and see it's this gluten intolerance. So, I immdiatly stop all wheat products. Symptoms stop. I experiment by eating a muffin a few days later. Bloating within 2 hours, cramps. Then OK. Contine gluten-free diet, no symptoms. Then experiment again, bloat again but no real painful attacks....canned soups seem to be the worse.

Last night I had an extremly painful attack again. I call them attacks becuase that is what they feel like...come on sudden, very painful...I mean painful...then I'm OK after I take a bentyl. The thing is yesterday I didn't eat any gluten (just had sushi for dinner and a salad for lunch at a resturant) so now am wondering if the gluten-free had nothing to do with symptoms going away...and in fact something else is wrong.

I have an appointment Monday with doc, but just wanted to hear what you guys had to say. I'm so tired of this. BTW I am losing weight fast...but that is becuase I was always so bloated when eating wheat I think. Also have broken 2 teeth in the past few months..lots of dental problems suddenly. I read dental changes were a symptom. Also have had un explained infertility my whole life despite lots of tests...I never did have children. I'm 47 now. When I was little I used to break out in rashes a lot, and sometimes when I eat wheat I get bumps in my mouth.

Can you have an "attack" even if you didn't eat gluten? Also since I haven't been eating gluten for 3 weeks will it still show up in a test?

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SueC Explorer
SueC
Posted

OK...You sound like a classic celiac.. If I knew nothing but"I feel better when I stop eating gluten" I would say yes to celiac but you have soooo many more classic symptoms. Please do not stop eating gluten until you are tested. It can give a false negative. There is gluten in so many things you would never expect so maybe your attack was caused by something hidden!!

Good luck and I hope you feel better but tell your doc about going gluten-free weeks ago. He will want you to go back to eating it in order to get an accurate diagnosis :(

Lena Newbie
Lena
Posted
  • Author

Hi Sue...thanks for responding so fast!

I can't imgine eating gluten and going through attacks until they test. It hurts so bad I have to scream into a towel...I mean it is painful until it passes. Some attacks hours, some are done within a half hour. I'm self employed and had to miss work when I had the attacks. My doc did give me a sublingual antispasmodic but still it doesn't work fast enough.

I thought it could be irritiable bowel but doc said no because it happens even when I sleep and wakes me up.

How do you cope eating gluten for testing? Would love to hear stratagies. How many days do you have to eat gluten for it to show up?

Thanks again!

Rachel--24 Collaborator
Rachel--24
Posted

I agree with the last post. Definately DON'T stop eating gluten if you're planning on being tested soon. This will mess up the tests.

Rachel--24 Collaborator
Rachel--24
Posted

Since you've stopped eating gluten for 3 weeks I'd say you'd have to be back on gluten for at least a couple months. Not positive on *exactly* how long but I don't think just a couple weeks would be enough time.

lbsteenwyk Explorer
lbsteenwyk
Posted

I'd bet anything you got glutened from the restaurant food. Cross contamination can happen easily in restaurants, even if you think the food is gluten free.

If you doctor thinks you have celiac, why doesn't he just go ahead and get the blood work now?? I would insist on it. You don't need to continue to go through pain while he does all his other tests.

Lena Newbie
Lena
Posted
  • Author

I see my doc tommorrow. At the time I hadn't tried the gluten-free diet so he was just throwing it out there as one of the many things that could be wrong. I had never heard of Celiac until he mentioned it. His main thing was to do a culture and make sure I didn't have a parasite or overgrowth of bacteria or something. The test results take a while to get back.

I feel a lot better today...the attack has pased.

so after reading this site yesterday these are the symptoms...which have gotten very bad within the past couple months.

Baaad cramps sometimes after eating...sometimes middle of the night.

bloating that comes on suddenly to where I look pregnant.

alternate diareahea and constipation

sudden dental problems

life long unexplained infertitlity

thyroid disease, diagnosed at age 30.

arthritis, joint pain (but was explained to me that was becuase of my athletic lifestyle)

I don't have migraines or moodiness like some of you do. I mean I'm moody but figured that 's just the way I am.

I notice after I eat pasta I get very bloated (that was before I got the attacks) and sometimes I would get bumps in y mouth after eating bread. pancakes were the worse...they would make me very sick plus my mouth will break out.

I've lost a whole size since I stopped eating gluten...that's just in three weeks. I'm back in a size 10. The weight loss all seems to be from my belly bloat ;)

So no matter what the doc says I guess I'm staying off gluten...feel so much better, other than the attack yesterday, which I still can't figure out. I also had one after lunch yesterday, but I think that was because my gut was still tender from the previous onslaught. I just want to make sure I don't have something else besides celiac that should be treated differently.

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Guest nini
Guest nini
Posted

My thinking is this, if you feel better not eating gluten, then this is obviously a problem and I would say stop eating gluten immediately. I am also in the "alternative health care field" I'm a massage therapist working for a chiropractor and I see so many people conditioned to not listen to their body's and keep looking for a Dr. to tell you what is wrong.

You've already noticed an improvement on the diet, and if YOU are comfortable forgoing any further testing (because you don't want to keep getting sick from gluten) Then by all means stay gluten free.

Your symptoms do sound exactly like what I went through and I called them "attacks" too... it's very scary when it's happening, but you can take control of the situation.

There are a lot of people that are going to tell you that you have to continue to eat gluten and get all the tests run. I disagree with this. Listen to your body. Keep your Dr. updated on your improvements. If you DO NOT IMPROVE on the gluten free diet then it is most likely not Celiac, and the Dr. could run whatever other tests he needed to, but the whole reason they call it "medical practice" is that the Dr.s really only have their best educated guesses to go on.

But, you've already said you notice an improvement on the gluten-free diet. I would say that a positive dietary response is the best indicator around. My daughter does not have a medical dx of Celiac, but she improved so greatly on a gluten-free diet and reacts so badly whenever gluten accidentally gets into her system, that there is no way I will ever let her willingly consume gluten. You have to be your own advocate for your health.

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

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      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
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