No Biopsy Diagnosis By Dr.

[maryjoali]

I attended a Celiac Education Day and heard that in order to be truly diagnosed as a Celiac you must have a positive biopsy. My doctor put me on a gluten free diet and then referred me to an allergist specialist doctor. He did blood work (positive) and the skin allergy test thing (reaction to wheat, rye, oats, melons, nuts & peanuts, casein). He referred me to a dietician for Celiac diet. Both my family doctor and the specialist told me that there was no reason to go for the biopsy since I am "too young" (28!)...I had one when I was 15 for a hiatus hernia, so I have no idea how age is now playing a factor! Anyway, I have been gluten-free since January now and from what I've learned here and from the workshops today, the healing has likely begun and the biopsy would be negative anyway.

I just feel so frustrated since both doctors (MacMaster Hospital) and the dietician (Shelley Case) all reinforced how important it is to have the biopsy to be properly diagnosed. Why would neither doctor refer me??? I know it's likely due to misinformation, but the specialist truly seemed to know so much about Celiac.

To me, there is absolutely NO way that I will even take a morsel of gluten, let alone enough to being back the intestinal distress!

Just needed to vent.....although I did learn a lot today!!

[ravenwoodglass]

"I just feel so frustrated since both doctors (MacMaster Hospital) and the dietician (Shelley Case) all reinforced how important it is to have the biopsy to be properly diagnosed. Why would neither doctor refer me???"

Because you did not need one. You should be thankful to these doctors. The 'Gold Standard' is now more of the 'Old Standard', there are also times when the biopsies will be a false negative either because not enough damage is done or the did not biopsy the right spot and you can be left to go on a very long and painful journey until you are sick enough sot he damage is enough so they say 'yea it is definately celiac, all the villi are gone. Too bad this at times doesn't happen till an autopsy.

The true key for symptomatic celiacs is the response to the diet. If your blood work was positive and you have responded to the diet when followed strictly that really is all the diagnostics you need.

[ravenwoodglass]

"I just feel so frustrated since both doctors (MacMaster Hospital) and the dietician (Shelley Case) all reinforced how important it is to have the biopsy to be properly diagnosed. Why would neither doctor refer me???"

For some reason I manage to double post this when I added a bit on the edit. Sorry about that, It is early and I have not had that first cup of coffee.

Because you did not need one. In addition with the positive skin allergic reactions you should not be doing a gluten challenge, something you would have to do for a biopsy. You could have a life threating allergic reaction especially if you have been on the diet. You should be thankful to these doctors.

In addition the 'Gold Standard' is now more of the 'Old Standard', there are also times when the biopsies will be a false negative either because not enough damage is done or the did not biopsy the right spot and you can be left to go on a very long and painful journey until you are sick enough sot he damage is enough so they say 'yea it is definately celiac, all the villi are gone. Too bad this at times doesn't happen till an autopsy.

The true key for symptomatic celiacs is the response to the diet. If your blood work was positive and you have responded to the diet when followed strictly that really is all the diagnostics you need.

[maryjoali]

Because you did not need one. In addition with the positive skin allergic reactions you should not be doing a gluten challenge, something you would have to do for a biopsy. You could have a life threating allergic reaction especially if you have been on the diet. You should be thankful to these doctors.

Thanks so much for your reply! That makes me feel a lot better.

Do you know much about positive skin reactions? My naturopath said it's unusual for a Celiac patient to react with the skin scratch test unless the allergy is pretty severe? That seems to be what you're saying too...I haven't been able to find much research about that. Any other info. you have would be appreciated.

Thanks again!

[ravenwoodglass]

Thanks so much for your reply! That makes me feel a lot better.

Do you know much about positive skin reactions? My naturopath said it's unusual for a Celiac patient to react with the skin scratch test unless the allergy is pretty severe? That seems to be what you're saying too...I haven't been able to find much research about that. Any other info. you have would be appreciated.

Thanks again!

I think your naturopath is right on that one. Celiac or Gluten intolerance is just that an intolerance, it doesn't have a histimine type reaction for most of us. I did not skin test postive for gluten as an allergan but I still have DH, a skin autoimmune reaction instead of a histimine one. The histamine reaction can be fatal short term, the autoimmune reation takes longer, or just makes you wish you were dead.

You might want to post a query or even a poll as to how many of us are allergic and intolerant. The results might be interesting.

One other thing to note, when I was diagnosed by an allergist the skin testing showed me reacting to everything they tested for that was not food related, except beech trees. At that time I had asthma and was on Singulair and inhalors. Post gluten-free 5 years and I have very few allegies any more and have not used my inhalor or taken singulair in over 4 years. My allergist said that my immune system was in hyperdrive trying to protect me from the gluten reaction. Without the gluten that stopped.

[maryjoali]

I think your naturopath is right on that one. Celiac or Gluten intolerance is just that an intolerance, it doesn't have a histimine type reaction for most of us. I did not skin test postive for gluten as an allergan but I still have DH, a skin autoimmune reaction instead of a histimine one. The histamine reaction can be fatal short term, the autoimmune reation takes longer, or just makes you wish you were dead.

You might want to post a query or even a poll as to how many of us are allergic and intolerant. The results might be interesting.

One other thing to note, when I was diagnosed by an allergist the skin testing showed me reacting to everything they tested for that was not food related, except beech trees. At that time I had asthma and was on Singulair and inhalors. Post gluten-free 5 years and I have very few allegies any more and have not used my inhalor or taken singulair in over 4 years. My allergist said that my immune system was in hyperdrive trying to protect me from the gluten reaction. Without the gluten that stopped.

It'll be interesting to see what turns up in terms of environmental allergens when I go for the second round. I've only had the food ones so far. I am still so shocked how one allergy can send the body into a complete frenzy!!

I am going to do some more research about the allergic vs. intolerant....

On a separate note, I just bought a Bette Hagman book from someone with the same username as you in ebay. Was it you perhaps?? Small world if it is!!