Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Does This Sound Like Celiac Disease?
0

8 posts in this topic

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:

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

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.

richard

0

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.

0

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.)

0

Share this post


Link to post
Share on other sites




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.

0

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.

Tamara

0

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. ;)

0

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
0

  • Forum Statistics

    • Total Topics
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,701
    • Most Online
      3,093

    Newest Member
    Dtroutmann
    Joined