3 months gluten-free still feeling cramps

[Will-v]

Hi folks, I have been a lurker on this site since my diagnosis in the end of Oct of 2015 and I have been doing everything gluten-free since then. I am a 40 year old male and my whole ordeal started in Nov 2014 when I had the sharpest jaw pain that I could ever imagine, I went to the dentists several times and they found nothing and I was taking Advil constantly to numb the pain. They even saw an infection on my gums so they gave me antibiotics but they never did anything to the tooth because they did not know what was wrong so they told me to go to a root canal specialist. Finally I was able to go to a root canal specialist and he found my issue but I needed another round of antibiotics because I still had the infection. I got better in April of 2015 from the pain when my tooth was finally worked on and I was good for a while till June, that is when I started feeling my stomach cramps. the pain initially was not that bad so I naturally ignored it until it got stronger and that is when I went to my GP which referred me to my current gastrologist.  I told my gastrologist my symptoms which were of course stomach pains and cramps but also my sporadic constipation and rashes. He immediately started to suspect that I might have Celiac but he wanted to confirm with an endoscope first. I went in to do endoscopy in late September, both Celiac and H. Pylori came back negative from biopsy but I had gastritis and ulcers. In Late October I did blood work and Celiac came out positive, the doctor said that was weird :-/ .  They did CT scan and found that I have mucosal lesion in the small intestines and partial obstruction which I think it was the antibiotics that made the lesions but the doctors are not sure, I hate when they are unsure about things. The doctor rubbed my shoulder and said what I had was rare, rare how I asked but he was unclear when he talked but it boarded around mean at my age getting Celiac diagnosis.

Anyway I have been gluten-free since Oct 2015 and I did tone down my food intake with blander foods to heal the ulcer for several months in which I found that I was semi getting better but not quite and so I decided to really tone it down this past month eating nothing but rice and chicken for lunch and dinner and eggs in the AM but I still feel some cramping. The cramping is better than it was before but now it seems like it spread from my stomach to my right mid abdomen, I plan on seeing the doctor again soon but I am asking has anyone experienced this before? I hear stories of people going gluten free then in 2 weeks they are better and I looked at the stats and 90% of the people that go gluten-free feel better in weeks. My cramps are mild , from a scale of 1 to 10 it ranges on a 3 to 4 level and it also gives me the feeling of being numb around my stomach and mid abdomen on the right side. Has anyone experienced anything like this?

[peggy926]

Sorry to hear you're having so much frustration--celiac is so elusive--I get it..  Some celiac patients are also lactose intolerant, which is the case with my brother.   Ask your doctor if they think you might be lactose intolerant also. If you have access to a celiac specialist, such as at a University hospital, Mayo, etc., I would strongly encourage a visit since this is their field of expertise.  You must get to the bottom of your abdominal discomfort since it could be another issue not related to gluten. I was diagnosed over 20 years ago and  I was doing well for many years, but itching to high heaven lately--back to the drawing board.  Also, beware of any medications you may be taking as many meds have a starch filler that is wheat -based.  You can call the pharma company off of your bottle label or have the pharmacist call for you.  Same for over-the-counter meds.    Another tip that may be helpful is to use stainless, glass, or ceramic cookware as some surfaces such as non-stick can have gluten particles sticking to them. Best wishes!!

[frieze]

on that diet you may be too low in fiber, and malnourished.

[Will-v]

1 hour ago, peggy926 said:

Sorry to hear you're having so much frustration--celiac is so elusive--I get it..  Some celiac patients are also lactose intolerant, which is the case with my brother.   Ask your doctor if they think you might be lactose intolerant also. If you have access to a celiac specialist, such as at a University hospital, Mayo, etc., I would strongly encourage a visit since this is their field of expertise.  You must get to the bottom of your abdominal discomfort since it could be another issue not related to gluten. I was diagnosed over 20 years ago and  I was doing well for many years, but itching to high heaven lately--back to the drawing board.  Also, beware of any medications you may be taking as many meds have a starch filler that is wheat -based.  You can call the pharma company off of your bottle label or have the pharmacist call for you.  Same for over-the-counter meds.    Another tip that may be helpful is to use stainless, glass, or ceramic cookware as some surfaces such as non-stick can have gluten particles sticking to them. Best wishes!!

Thanks for your reply, i will look int that.

[cyclinglady]

First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research:

Open Original Shared Link

Open Original Shared Link

Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?  

I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.  

You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.  

You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!  

Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.  

I hope you feel better soon! 

[Will-v]

On 2/9/2016 at 3:04 PM, cyclinglady said:

First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research:

Open Original Shared Link

Open Original Shared Link

Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?  

I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.  

You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.  

You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!  

Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.  

I hope you feel better soon! 

Thank you so much for the info, I did replace all my cooking wares and I did just recently stop dairy (about 3 weeks ago). I guess I have to keep it going, thank you once again, this give me more courage to continue my quest in feeling better.

[cyclinglady]

Glad to help!   Never stop advocating for your health.  Be patient (that's the really hard part), but it is possible to feel well and recover from celiac disease.  Of course, you'll always have to avoid gluten as if it were rat poisoning, but there are worst things to worry about!   

It is nice to have a resource like Celiac.com.  It is anonymous, so you don't have to be embarrassed about asking what you may think are dumb questions.  

Hang in there!