Confused

[crzymomto4]

Hi!

About 5 years ago a gastro doc did the blood test for celiacs, because I had chronic diarrhea and other symptoms that pointed to possible celiacs. The test came back positive. The doctor did a biopsy which was negative. I was told I did not have celiacs. The doc said since I was overweight I had IBS. I was later diagnosed with fibromyalgia.

Fast forward to today. We have moved to another state. I still have all the symptoms but much worse. I am now diabetic (extremely insulin resisitant). About three weeks ago I developed a blistery, red, itchy rash on both of my elbows. Nothing helps this rash. I have tried Benadryl (oral and topical), claritin and Zyrtec. it will go away in small spots but other bumps appear on other parts of the arm but in close proximity to the rest of the rash.

Does this sound like celiacs? I am seeing a new dr. on Friday to establish medical care in our new area. What should I tell/ask the doc?

Thank you,

Denise

PS. My 12yos has many of the same symptoms minus the rash.

[Lisa]

  crzymomto4 said:

Hi!

About 5 years ago a gastro doc did the blood test for celiacs, because I had chronic diarrhea and other symptoms that pointed to possible celiacs. The test came back positive. The doctor did a biopsy which was negative. I was told I did not have celiacs. The doc said since I was overweight I had IBS. I was later diagnosed with fibromyalgia.

Fast forward to today. We have moved to another state. I still have all the symptoms but much worse. I am now diabetic (extremely insulin resisitant). About three weeks ago I developed a blistery, red, itchy rash on both of my elbows. Nothing helps this rash. I have tried Benadryl (oral and topical), claritin and Zyrtec. it will go away in small spots but other bumps appear on other parts of the arm but in close proximity to the rest of the rash.

Does this sound like celiacs? I am seeing a new dr. on Friday to establish medical care in our new area. What should I tell/ask the doc?

Thank you,

Denise

PS. My 12yos has many of the same symptoms minus the rash.

....................................................................................................

...........................

YES, IT DOES SOUND LIKE CELIAC. And, you doctor is not informed. I assume that you tested positive through blood work. If that test was positive, that is a diagnosis. It does not matter if your biopsy is negative. Biopsies can be very hit and miss and as a result, not a reliable tool for diagnosis.

You can have your rash biopsied for DH. A positive diagnosis for DH is also one for Celiac.

Should you want to be retested for Celiac, this is what should be ordered by your doctor: (assuming that you have continued to eat gluten)

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Welcome to the Club.

(sorry, don't know how this format happened)

[Rachel--24]

Yes, it sounds like Celiac and since you did have positive bloodwork you do need to be on the gluten free diet. A negative biopsy does not rule out Celiac....its hit or miss. Damage can be "patchy" and easily missed...especially if only one or two samples are taken.

The rash sounds like Dermatitis Herpetiformis (DH) which is associated with Celiac Disease. Open Original Shared Link

If you're looking for a "gold standard" diagnosis you can repeat the biopsy and you may get positive results this time. You can also have your skin tested to see if the rash is DH...this would also be diagnostic for Celiac.

Open Original Shared Link

The positive bloodwork is also diagnostic....unfortunately, it seems that your previous doctor didnt feel that it was enough. You should have been told at that time to begin the gluten free diet even with the biopsy coming back negative.

If you wish to have more testing done you cannot start the gluten free diet until all testing is completed.