Newbie - Testing Questions

[STrumbo]

Hello!

This may get a little lengthy, so I apologize in advance! It has been a long road which has lead me here, so please bear with me.

A little background; I have been struggling with different tummy issues most noticeably starting after the birth of my middle son (who is now 12). It started off with about 8-12 weeks of diarrhea and I lost weight during that period of time, getting down to about 92 lbs. From what I remember back then, the doctors did a myriad of different testing, and I even saw a Gastroenterologist who performed different tests; all ending up to be "normal". Different test that were performed during that period of time were Hida Scan, Gastric emptying Scan, Cat Scan or MRI...I can't remember its been so many years ago now, Colonoscopy, endoscopy, along with many lab tests/bloodwork. Everything came out "normal". The Gastro ended up telling me I have "IBS and am lactose intolerant". After months of allowing all of the different testing from the Gastro and him coming up with the blanket "you have IBS", I just let it go and decided I would have to live with the symptoms I was dealing with. 

Over the last 12 years since I really noticed my symptoms coming to a head, I have dealt with constant bloating, gas, belching, and severe stomach distention and pain which is typically located mid to Upper right quadrant. I don't know if this is where the gas gets trapped or what, but Im always bloated looking about 6 months pregnant it seems! I had allergy testing done two weeks ago to see if maybe that was my issue, and I tested positive for over 30 food allergies. I don't get Anaphylactic reactions that I know of, but I have numerous stomach symptoms. 

The reason why I've landed here on this forum is because after researching the allergens I tested highest to Ive noticed they are also related to possible Celiac Disease. My highest allergens other than Peanut, Tree Nut, and Peas are Wheat, Rye, Barley, Oats, Corn, and Soy. I know the IGE reactions tested via the allergy testing are different than the celiac testing for reactivity to gluten, but my allergist wondered if there was a correlation and ordered gluten testing to see if I may be Celiac. My problem is that I do not believe the Allergist ordered the proper tests. I do not want to second guess the Allergist, but I feel like some of the tests are not correct. The Order was for Ttg, Iga and TtG IGG, gluten testing, and IGA/IGE/IGG.

The only tests out of that order that seem to be related to Celiac testing are the TtG tests, and the total serum IgA, am I correct? Knowing my total serum IgG and IgE wouldn't be of any benefit to Celiac testing, nor would "gluten testing"; whatever that is.

I feel like I may not get a clear picture as to whether I could be at risk for Celiac because my doctor didn't order the Gliadin tests, EMA test, or any gene typing (I looked up Celiac Testing on Mayo Clinic website). Will the TtG tests be enough? I know that being Allergic to Wheat, Rye, & Barley is a good enough reason to go gluten free, but to me that doesn't explain my constant stomach distention and swelling/severe abdominal pain episodes. Im not Anaphylactic to Wheat, Rye, Barley...etc so it's difficult to go on the diet without knowing for sure if these allergens are causing my stomach issues. In my mind having only stomach issues isn't very indicative of a true allergy so I am having a hard time justifying eliminating 30+ foods based on testing positive alone.

I know this was a long rant, so I appreciate those of you who hung in there. Any advice is appreciated with regard to testing I should request, or if I should press the issue further with my allergist.

 

Thanks!

 

[cyclinglady]

3 hours ago, STrumbo said:

Hello!

This may get a little lengthy, so I apologize in advance! It has been a long road which has lead me here, so please bear with me.

A little background; I have been struggling with different tummy issues most noticeably starting after the birth of my middle son (who is now 12). It started off with about 8-12 weeks of diarrhea and I lost weight during that period of time, getting down to about 92 lbs. From what I remember back then, the doctors did a myriad of different testing, and I even saw a Gastroenterologist who performed different tests; all ending up to be "normal". Different test that were performed during that period of time were Hida Scan, Gastric emptying Scan, Cat Scan or MRI...I can't remember its been so many years ago now, Colonoscopy, endoscopy, along with many lab tests/bloodwork. Everything came out "normal". The Gastro ended up telling me I have "IBS and am lactose intolerant". After months of allowing all of the different testing from the Gastro and him coming up with the blanket "you have IBS", I just let it go and decided I would have to live with the symptoms I was dealing with. 

Over the last 12 years since I really noticed my symptoms coming to a head, I have dealt with constant bloating, gas, belching, and severe stomach distention and pain which is typically located mid to Upper right quadrant. I don't know if this is where the gas gets trapped or what, but Im always bloated looking about 6 months pregnant it seems! I had allergy testing done two weeks ago to see if maybe that was my issue, and I tested positive for over 30 food allergies. I don't get Anaphylactic reactions that I know of, but I have numerous stomach symptoms. 

The reason why I've landed here on this forum is because after researching the allergens I tested highest to Ive noticed they are also related to possible Celiac Disease. My highest allergens other than Peanut, Tree Nut, and Peas are Wheat, Rye, Barley, Oats, Corn, and Soy. I know the IGE reactions tested via the allergy testing are different than the celiac testing for reactivity to gluten, but my allergist wondered if there was a correlation and ordered gluten testing to see if I may be Celiac. My problem is that I do not believe the Allergist ordered the proper tests. I do not want to second guess the Allergist, but I feel like some of the tests are not correct. The Order was for Ttg, Iga and TtG IGG, gluten testing, and IGA/IGE/IGG.

The only tests out of that order that seem to be related to Celiac testing are the TtG tests, and the total serum IgA, am I correct? Knowing my total serum IgG and IgE wouldn't be of any benefit to Celiac testing, nor would "gluten testing"; whatever that is.

I feel like I may not get a clear picture as to whether I could be at risk for Celiac because my doctor didn't order the Gliadin tests, EMA test, or any gene typing (I looked up Celiac Testing on Mayo Clinic website). Will the TtG tests be enough? I know that being Allergic to Wheat, Rye, & Barley is a good enough reason to go gluten free, but to me that doesn't explain my constant stomach distention and swelling/severe abdominal pain episodes. Im not Anaphylactic to Wheat, Rye, Barley...etc so it's difficult to go on the diet without knowing for sure if these allergens are causing my stomach issues. In my mind having only stomach issues isn't very indicative of a true allergy so I am having a hard time justifying eliminating 30+ foods based on testing positive alone.

I know this was a long rant, so I appreciate those of you who hung in there. Any advice is appreciated with regard to testing I should request, or if I should press the issue further with my allergist.

 

Thanks!

 

Welcome! 

My advice (I am not a doctor) would be to insist in the complete celiac panel (EMA, DGP).  Why?   The TTG is good, but does not catch all celiacs like me.  I have never had a positive on the TTG tests, even in follow-up testing.  Any MD can order the panel.  

The allergy tests are not super accurate and celiac disease is not an IgE response.  It is included in the four hypersensitivity immune responses though.  Active celiac disease is linked to Zonulin, the gatekeeper to the gut.  Celiacs tend to have too many of them causing a "leaky gut".  It may be one reason we all have various intolerances that come and go.  

If the panel is negative, you should ask for an endoscopy as some 10% of celiacs are seronegative.  

Complex, huh?  

Of course, you might not have celiac disease, but it is a place to start!  I could have sworn that my tiny niece had celiac disease, but it turns out she has Crohn's.  It was caught by her 4th GI with a pill camera.   The damage was out of reach of both scopes.  

Why tell you this?  Do not give up.   Something is wrong and you should advocate for your health!  

Finally, get and keep all your medical records, you will never be sorry!  

Let us know if you need more information.  

[STrumbo]

Thank-you! I will wait to see what the TtG test reveals first (it was sent to Mayo Clinic), but once I know if that is negative or positive, I will then push for the EMA/DGP if nescessary. I had an endoscopy when I was first exhibiting symptoms back 10/12 years ago when I dropped to 92 lbs in the matter of 8 weeks, but it showed no villous blunting I believe. Of course at that time I was only eating rice and grilled chicken, as tolerated, because literally everything else would give me the big "D"!!! I can't say I had a solid meal in 10 weeks prior to that scope, and the Gastro knew that. She wasn't testing specifically for Celiac then though.

Nowadays I am definitely of average weight so I'm not underweight, I only have daily stomach pains, constant gas that makes my stomach bloat....etc. I know I have other Celiac/Gluten intolerant symptoms, but I guess some of these things could be true for other maladies as well. I have short stature being only 5 feel tall, was tiny my whole life (80/90 lbs until I graduated highschool and until I had my little ones, had a stillborn child at full-term (Ive read this ties in sometimes), and just various other symptoms here or there that make me wonder if this could be the culprit.

I appreciate the feedback, and certainly won't give up on my health until I have an answer/fix. Sooner or later I am sure something will have to present itself as an explanation for the tummy pains:(