Does This Sound Like Celiac Disease?

[Mommyto2too]

I am now 20, but since I was 15 years old, I have been having terrible "attacks". The always happen at night, usually while I am sleeping, and they wake me up. the pain is excrutiating, makes me curl into fetal position, and is way worse than childbirth, in my opinion. Nothing calms the pain, and in about 2-3 hours, it just goes away. It feels like my whole stomach and back is just in huge knots ans spasms. I hae had tests done, but no test for Deliac disease, someone just mentioned it to me today. I have no food allergies that i know of, and I eat pasta, bread, cereal, etc all the time with no reaction. These attacks only come about once every 6 months. We first thought it was gallstones, but after several unltrasounds found out it wasn't. I can't make any real connection between the attacks and a certain kind of food, or medicine or anything! I am so lost, and the doctors have just said "we just don't know" and make me feel like i am over reacting. I would blame it on childbirth, but I certainly didn't have my baby at 15. Anyone know? Any help would be appreciated!!

[Guest jhmom]

Welcome Mommyto2too

I can' tell you if you have Celiac or not but I would suggest seeing a Gastro doctor about it. Another suggestion is to keep a food diary so that you can keep track of what you eat along with a detailed list of your symptoms, when they occur and how long they last. This may help your doctor give you an accurate dx.

There are some people with Celiac that do not have the "classic GI symptoms". In addition a lot of times when we Celiac's have a reaction to gluten it can happen anywhere from 30 minutes up to 10-12 hours.

I do hope you get to the bottom of this and feel better soon. No one should have to suffer like that even if it is once every 6 months, listen to your body, you know this is not normal. See the doctor and if need be keeping seeing them until someone listens to you and takes you seriously or at least is willing to investigate ALL possibilities.

Take care and Gob Bless

[lovegrov]

This doesn't sound much like celiac to me. It does, however, sound a lot like the rare attacks I get that the doctors THINK are esophageal spasms. The pain starts in front just below or around the end of my breastbone and spreads to my back. The pain is excruciating and at its worst makes it hard for me to breathe. Does this sound like what you're having?

I had several of these attacks when I was in my 20s and then they disappeared until last year (age 47) when I had one more. For me they last 45-60 minutes and then just go away. Because of my age, doctors worked me up to check for heart problems but found nothing there. I now have a prescription for a medication that is much like the nitro people take for heart pain. It's a fast-acting muscle relaxant that you put under your tongue. I haven't ever had to use it so can't tell you if it works.

richard

[tom]

13-14 yrs ago i started having what Mommyto2too describes.

I now am positive it was the first of my adult celiac symptoms.

It was somewhat rare and certainly unpredictable, happening once every 1-6 months, i'd guess.

It was probably another 5 yrs before the next symptom (occassional diarhhea) came along.

[tarnalberry]

While no one here can say it's _not_ celiac disease, it doesn't fit the common, or even the often reported uncommon, symptoms. If I were having that problem, I'd probably look into other causes first, given the lack of other celiac symptoms. At the same time, all it takes to have reasonable confidence is a blood test, and that's not that hard to do. (BTW, I had something similar to that, though only once, and they still think it was either gall or kidney stones, but think I passed them before the tests were run at the ER since they didn't find anything. Diets too high in Vit C, fat, and a couple other things can exacerbate these problems.)

[tom]

Ya that was the point.

It's not a symptom i've seen mentioned here. I'm sure it was the beginning of my intestinal damage / villous atrophy. I can't even describe how painful it is, tho she called it worse than childbirth and it appears she's been thru childbirth twice.

The other point was that it could be years before the more common symptoms develop, if her path moves along like mine did.

[tamara]

Dear Mommy,

I had to join the forum and reply. I was shocked when no one else experienced your symptoms. They are identical to the way I started out. I had the same attacks, worse than childbirth and i have delivered twice. I used to think they were stress events that caused the pain, so bad that I could faint. Mine seemed to be directly associated with digesting fresh milk when I was 16. I eliminated dairy and was pretty close to controlling the severe pain and cramping. However, I have always had problems since. Never felt "good." Always limited by where the nearest bathroom was as my "problem" progressed. Diagnosed with IBS, colitis, duodenal ulcer in the 70's. I am now 54. During the last 5 years I was diagnosed with osteopenia, and developed muscle pain, bone pain, arthritis, along with some of the other mysterious symptoms that are described in the celiac newsletters. I went to the doctors, even a gastroenterologist in the last 5 years to no avail. Then I went on the Atkins Diet to lose a few and after a few days experienced my first day of no arthritis pain. A miracle. I had been so uncomfortable, i wasn't sure if I could continue working. And my other "problem" was so much better, I was not feeling "sick" as often.

As you all know, Atkins eliminates bread and carbs in the first two weeks. I thought I was on to something, tried another gastro doctor who allowed me to have the blood test and I was positive. He wanted to do the endoscopy, but why, I already knew what I had to do.

I just wanted you to know that I experienced your symptoms exactly, in the beginning. I would love it if you did not have to go through the years of struggling with this secret and embarrassing

problem. I would like to add that I was anorexic, before it even had a name, when I was in high school but the reason was because food hurt and I knew that I felt better if I didn't eat.

I would do all the things people suggest on this sight, the food diary etc., I only wish I had figured it out years ago. This is a tough diet to have in America where our food supply revolves around wheat and breads, but to be painfree and in control of my symptoms is a miracle.

Tamara

[tom]

Tamara ! Finally another celiac w/ that awful night pain symptom. I knew it wasn't just me. Mommy started this thread last April, so we can only hope she went gluten-free.

I sent a separate email to her after 1st reading this thread in Dec., but didn't get a reply. I too would love it if she doesn't have to go through full-blown celiac.

I'd long suspected many undiagnosed celiacs praising Atkins, when the issue wasn't really carbs, but gluten. You're the 1st one i've met tho Tamara. Way to go w/ getting the blood test done.