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Doctor Believes I Have Celiac Disease

sgm405

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sgm405 Rookie
sgm405
Posted

Hello everyone. This is my first post here, so I figured I'd share my story.

For the longest time, I've had stomach problems. Dating back to high school, I've always had to use the restroom many times throughout the day, and always soon-after eating meals. For years I just dealt with it, before my then-girlfriend-now-wife pushed me to go see a doctor. They diagnosed me with IBS and tried several medications for it. Some seemed to help a bit, but the problem still existed. I chalked it up to having a weak stomach.

About two months ago, I began experiencing neuropathy in my feet, ankles, and calf muscles. This lasted for about two weeks, then turned to more of a tight/sore feeling in my feet and ankles. Since then, this has been off and on. Some days I feel OK, other days they feel very sore. My mother has MS, so that was (and still is a bit) my main fear.

My doctor sent me to a neurologist. They ran me through a series of tests (walking on my toes, sensitivity, etc) and everything seemed normal. My doctor said he believed that I might have Celiac Disease and scheduled me for an appointment to see a Gastrointestinal Specialist in a few weeks. My blood work came back almost normal - everything was good except a positive ANA test. They are sending me for "Athena" genetic testing this Monday.

That's where I'm at now. My main symptoms are a regular upset stomachs and sore feet/ankles (on and off).

I just wanted to introduce myself to you all and see what your thoughts were as far as his hypothesis that I have Celiac.

Thanks!

Steve

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ciamarie Rookie
ciamarie
Posted

Hi Steve, and welcome to the forum! I hope you get some answers soon.

Since you didn't mention it, I also wanted to make sure the Dr. didn't tell you to start on a gluten-free diet yet? Sometimes they do, but that may have an effect on test results. On the bloodwork, did that include any celiac tests? You should probably get the results for your own records if you can, and feel free to post them here so others who are familiar with such things can give you input; if you want to that is.

sgm405 Rookie
sgm405
Posted
  • Author

Hi Steve, and welcome to the forum! I hope you get some answers soon.

Since you didn't mention it, I also wanted to make sure the Dr. didn't tell you to start on a gluten-free diet yet? Sometimes they do, but that may have an effect on test results. On the bloodwork, did that include any celiac tests? You should probably get the results for your own records if you can, and feel free to post them here so others who are familiar with such things can give you input; if you want to that is.

I started to go gluten-free for a few days (and started feeling better), but my wife read online that it could mess up the testing so I resumed my normal eating habits (and started feeling symptoms again).

I'm not sure what they tested for exactly, but I will ask for the full results the next time I go in. They just called and told me I had a positive ANA result, wanted to do further testing, and still wanted me to go to the GI doctor.

It's funny...I've dealt with stomach issues since high school but always chalked it up to having a weak stomach. I don't know why, but I never considered the possibility that it could be something more.

Thank you for your welcome, I appreciate it.

Skylark Collaborator
Skylark
Posted

Welcome from me as well. Gluten intolerance/celiac can cause all the symptoms you are describing. The tests are only maybe 75% sensitive, the other 25% of celiacs don't have positive blood tests. With all the GI history I'd push for a celiac biopsy before I accepted a diagnosis of MS. The ANA does show you have some autoimmunity going and autoimmune diseases tend to cluster.

Once celiac testing is done, give the gluten-free diet a good strict try for 4-6 months to make sure you're not non-celiac gluten intolerant. You have nothing to lose and a lot to gain. I thought I had a weak stomach and IBS too. Turns out it was all from gluten.

Also, has your neurologist tested you for B12 deficiency using a good test like homocysteine? It's well worth considering taking some B-complex including B12. There is also a form of thiamine called benfotiamine that a lot of people find helpful for neuropathy. The inflammation from gluten intolerance/celiac can cause a lot of trouble absorbing vitamins and the resulting deficiency can cause neuropathy.

frieze Community Regular
frieze
Posted

and your mom needs to be tested!

Raven815 Rookie
Raven815
Posted

Hi SGM,

I'm also fairly new here and I'm still learning, but I thought I'd throw my two cents in (for what it's worth). First of all, my Mother was diagnosed celic about 30 years ago so I am somewhat familiar with how the disease works. The interesting thing with me is, in 1991 I was diagnosed w/ MS. I had double vision for about 7 months. After that went away, I have never had any more problems with it and it has been, what, 21 years. A few years back, I was in the hospital with stomach issues (they never figured what was wrong), and the neurologist saw me (same one who diagnosed MS), and he said he couldn't believe that I was diagnosed w/ it and wondered if I actually ever even had it. I also have many other autoimmune diseases such as diabetes and Hashimoto's. I've always had a bad stomach, but never put 2&2 together. Well, huge wake up call when I developed a terrible rash the beginning of March, did a little research, and figured I probably did have celiac (DH). So, you could have MS, but you probably do have celiac. I have been off of gluten for a month and my rash is tons better. I will not be going back on gluten for any more testing. I might look into genetic testing, but the biopsy I had shows positive IgA antibodies, and from what I understand that means celiac. Good enough for me.

Good luck to you and keep us posted,

Laura :D

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