New Here, And Now What? Hla-Dq8 Positive

[WendyRB]

Hello everyone-

I'm new here and could use some input about what to do.

 

I am 58 years old and I have struggled with pretty severe digestive issues my entire life. As a child I was very underweight and would have horrible attacks of very intense abdominal pain. Finally my parents insisted the doctor "do something", so they did exploratory abdominal surgery when I was twelve. All they found was six inches of my small bowel had attached to the side of my stomach, which was corrected surgically.

 

I continued to struggle off and on. When I was 30, my internist finally sent me to an "environmental ecologist"- a doctor who specialized in environmental illnesses (like food allergies). She put me on a very strict elimination diet and much to my surprise, I discovered I am extremely lactose intolerant. I was also very surprised to discover that the severe headaches I suffered from were caused by eating bread and wheat.

 

I went completely gluten-free for two years and lost about 20 pounds. Then a neurologist put me on inderal for migraines, and suddenly I could eat wheat again without getting headaches. I gained 15 pounds in six weeks.

 

In the meantime, I tried to avoid gluten but wasn't strict like I had been. During the next 20 years I struggled with diarhea that got so bad I could eat anything and was given an emergency colonoscopy, where lesions were discovered and I got a diagnosis of ulcerative colitis. I fought it for about seven years, taking prednisone when necessary, and then it finally cleared up. Now my doctor thinks it was not UC, since that doesn't really go away, and instead thinks it was ischemic colitis.

 

Then I began to have horrible attacks of extreme nausea, intractible vomiting, and diarrhea. These attacks were so bad I began making trips to the ER/urgent care at least once a month. On four occasions it was so bad that my husband called an ambulance, and I was transported to the hospital two hours away twice.

 

My GI doctor did every test in the book, and all the results came back negative: CT scans, MRIs, small bowel follow through, xrays, sonogram, bloodwork. I was tested for Celiacs several times, always negative (but I was doing a mostly gluten-free diet). Finally he sent me to Stanford University Hospital, where I was given specialized motility testing, and got a diagnosis of small bowel dysmotility (very slow transit through the small bowel) and colon inertia.

 

I changed my diet (no gluten, diary, beef, corn, nuts), got meds to help the motility, worked on stress and rest, etc. and am now doing much better. It was discovered that I have osteoporosis, low B12, and low vitamin D. Also although my blood tests are normal, I take synthroid because I have literally every symptom of low thyroid. Without the synthroid and B12 injections I give myself monthly I can hardly get off the couch.

 

I recently changed doctors, and this doctor felt that even though I have had several negative blood tests for Celiacs, it would be worth it to have the genetic testing. So I did- and tested positive for the HLA-DQ8 gene. I was notified that I carry the gene- but that's it. No follow up, no suggestions. I contacted the doctor who said without a gluten challenge (and I think endoscopy) there is no way to be sure.

 

So- my (long-winded) question is: what to do? I really don't want to do the gluten challenge. I am feeling so much better. When I eat gluten, it doesn't make me sick immediately like lactose does. What happens is that I get swollen (hands, face, gut), and then a bad headache. It also completely stops my digestion. SInce constipation is what leads to the horrible episodes of vomiting, and gluten makes me severely constipated, the idea of going on gluten for six weeks to challenge it sounds like torture to me.

 

Any suggestions???

Thanks!

 

[mamaw]

  I  think you have  already  answered  your own  question.....You feel  much  worse  when  eating  gluten. You feel much better   when NOT  consuming  gluten.. You  are  an  adult & know  your  body  reactions  better  than  anyone including  the  medical  field  ....

 

If  you  don't  need  the  medical  board's  seal of  approval  to be  gluten-free then  stay gluten-free... If  you are a person  who needs  it  to be  confimed  by  a  medical  doctor  then  go  back  to  eating  gluten, be  tested  & move  on  from  that  point...

And  remember the  testing  may not  change  anything  esp. if  you    have  non-celiac  gluten sensitivity. No  test  for that just the  elimination of  gluten.... which  again  should  be  100%  gluten-free  !00%  of  the  time.....so  the outcome  is  the  same.....

good luck

[shadowicewolf]

About 30% of the population of the U.S. carries the genes (HLA-DQ8 and HLA-DQ2), yet have no issues. Celiac is often triggered by stress/sickness/surgery/etc.

 

You could have celiac or you could have NCGI (non-celiac gluten intolerance) which acts a lot like celiac.

 

Mamaw is right, you don't need a doctors approval to go on a gluten free diet.

[WendyRB]

Thanks for the replies. I did get an answer from my doctor, who is a well-known celiac expert.  Here is her reply to my question about it:
"The reason to determine whether you have celiac disease is because with celiac disease you are at risk of developing malabsoption, osteopenia and there is a slight increased risk of intestinal malignancy (though this is rare). If your problem is not celiac disease but rather a gluten intolerance then you don't have to be as strict in avoiding gluten and should not adversely affect capacity to absorb or bone health, or malignancy."

I was very strictly gluten-free for two years, and if you combine that with lactose intolerance, it can be very hard to have any kind of social life. So it would be nice to know if I could get away with eating a cupcake once in a while or if I really need to be serious about avoiding it altogether.