• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Does This Sound Like Celiac Disease?

Rate this topic

Recommended Posts

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!! :huh:

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Guest jhmom

Welcome Mommyto2too :D

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

Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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.)

Share this post

Link to post
Share on other sites
Ads by Google:

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.

Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

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. ;)

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Beth N
  • Popular Now

  • Topics

  • Posts

    • Here is a partial list of what I no longer suffer from as a result of not eating wheat. Some like the sleep apnea and gerd and back pain and addiction to alcohol were almost immediate. The foot pain is improved to just numbness sometimes. My long term depression went away when I added vitamin D 10,000 iu a day for a year, but the improvement started almost immediately. Muscle tone and energy improved when I added iodine. one sheet sushi seaweed a day. My Fibromyalgia is controlled with 15 mg oral Prednisone a day. I remember as a kid waking up and having to pick the dried mucuos off the roof of my mouth. That is gone and for the first time in my life I am a nose breather. Drink lots of water to help with the mucous if it is thick. Some mornings mine is like rubber cement. I need to quit smoking now.  You can improve have faith, but healing takes time. Stay the course. A Romaine lettuce salad everyday helped the gut pain. Gerd shortness of breath sleep apnea back pain snoring prostrate hypertrophy contact lens protein buildup night vision improved cataracts reduced head hair growth foot pain sleeping no more than 2 hours at a stretch slow healing no energy. Pretty much bed ridden. 
    • Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition. Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.   well said, doesn't need a label.
    • We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.
    • Hi Kurasz, How's it going?  Any change for the amazingly better?  Or slightly better?  
      If not, hang in there, and keep praying! :)
    • Garden of Life brand Dr. Formulated Organic Fiber. It's certified gluten free. Also free of psyllium husk, dairy and soy. Also found that just simply increasing fiber intake works wonders. Perhaps try skipping a protein for at least one meal and fill up on veggies and fruits.
  • Upcoming Events