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Celiac, Not Celiac, Celiac, Not Celiac

kayo

By kayo
in Coping with Celiac Disease

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kayo Explorer
kayo
Posted

So frustrated and my spirit is a bit broken. I just need to vent.

Since my Prometheus results came back negative for the celiac gene (they only test for 2, 8) my doc has decided I likely don't have celiac. I told her when I saw her the first time that my genes were negative (Enterolab 4, 5) and she said it didn't matter, she felt I was celiac. So now she says it's probably non-celiac gluten intolerance. I'm in the camp that believes they're the same thing so it doesn't matter to me, I'll remain gluten free. However she suspects I may have a fructose intolerance and/or bacterial overgrowth. I'm also going for food allergy testing. The dreaded skin testing which I've had done numerous times before and always comes back negative. I asked if they did the blood IgE testing which is supposed to be more accurate than the skin pricks and the person setting up the appointment wasn't familiar with it. <_<

All these appointments take up so much time. I've had 4 in June and I have another 5 in July. I hate having to use up my vacation time going to the doc and/or going for tests. The tests for fructose intolerance and bacterial overgrowth can't be done on the same day and they take 2-3 hours each. Have any of you done this?

I hold no hope the allergist will be useful. I've seen allergists off and on my whole life and they have never been remotely useful. The skin test is a waste of time. When I saw an allergist 5 years ago and mentioned I was having all these issues and was sure it was food related they weren't helpful at all, they were so focused on things like pollen. (I do have seasonal allergies) But they never relayed any information on how this could be connected to food allergies or gi distress.

I have since read info about a connection between soy and birch allergy/intolerances, cross-reaction allergy and oral-allergy syndrome which may provide some info as to why I'm not getting better but I'm not hopeful. Sadly, I often seem to be more up to date on these things than the doctors I'm looking to for help. I feel like I will be left to figure this all out on my own.... yet again.

Like, did you know there's a B12 gum and a liquid calcium/magnesium supplement? My doc had no idea. I went searching for vitamins that I could easily swallow or grab on the go. Calcium pills are ridiculously huge and hard to swallow so I found a liquid. B12 (the kind that dissolves) often contains lactose so I found a gum I can chew that is gluten/soy/dairy free which also freshens! My doc didn't even remember I'm dairy intolerant. :(

I'm so frustrated. Thanks for reading.

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burdee Enthusiast
burdee
Posted

I suggest you request an ELISA (enzyme linked immunosorbent assay) test for food allergies. I took 3 different forms of that test to diagnose 4 of my 6 food allergies (besides gluten intolerance). Skin tests aren't very accurate for food allergies. However, I also encourage you to get a stool test for bacterial (parasitic or fungus) overgrowth. A good stool test lab will also tell you what drugs or herbal supplements can treat whatever bug you have in your gut. Those are not as rare as you might think. I've had 8 different gut bugs during the past 4 years (5 bacteria, 2 parasites and candida). All were diagnosed by stool tests. All were successfully treated and eliminated (didn't show up on subsequent stool tests) except for a parasite (dientamoeba fragilis) which I'm currently treating with paromomycin. Digestive issues aren't always caused by food allergy reactions.

SUE

Like, did you know there's a B12 gum and a liquid calcium/magnesium supplement? My doc had no idea. I went searching for vitamins that I could easily swallow or grab on the go. Calcium pills are ridiculously huge and hard to swallow so I found a liquid. B12 (the kind that dissolves) often contains lactose so I found a gum I can chew that is gluten/soy/dairy free which also freshens! My doc didn't even remember I'm dairy intolerant. :(

I'm so frustrated. Thanks for reading.

Mari Contributor
Mari
Posted

The more that people report their Promethus Lab test results and are very confused the more I wonder why this older less specific test is used instead of the more specific and informative test for the DNA markers and the blood tests for antigliaden and tissue transglutaminase. The Dr. I saw who suggested Celiac Disease ordered a Celiac blood panel (not Prometheus) and only one test was positive the alpha antigliaden antibody. She became uncertain and thought maybe I didn't have celiac disease. By this time I had started a gluten-free diet and could feel that avoiding gluten was right for me. Instead of dealing with the now uncertain Dr I ordered the genetic marker test from Enterolab and have never regretted spending the money. The results showed that I have 2 Celiac markers, was at very high risk for developing celiac disease and had the symptoms. That convinced me that I am gluten sensitive and it is me who needed to be convinced, not any Dr. I also had skin tests which were all negative even tho I was allergic to a number of things. By the time I was diagnosed later in life I had symptoms of RA and Lupus which have mostly gone away unless I am glutened.

kayo Explorer
kayo
Posted
  • Author

Thanks for the responses.

I too did the Enterolab testing on my own because I was getting nowhere with doctors. I don't regret spending the money either. The results showed I had gluten intolerance but not celiac. Then I saw a celiac specialist who diagnosed me with celiac based on the myriad of symptoms I had and the fact that I was doing better on the gluten-free diet. However once the Prometheus results came back she changed the diagnoses to gluten insensitive. Prometheus only tests for the known celiac genes HLA DQ 2 & 8 whereas Enterolab will tell you which genes you have. I have 4 & 5. The 4 is associated with RA and the 5 is associated with gluten intolerance.

It doesn't really matter to me if I'm celiac or not celiac I know I need to be on a gluten-free diet. However it bothers me that this doc was so sure it was celiac based on a number of factors and then that was all tossed out the window based on one test, which in my opinion is not the end all be all of a diagnostic. When I had the bloodwork tests for gluten I was already gluten free so those all came back negative.

When I see the allergist I will insist on the ELISA over the skin test.

I also encourage you to get a stool test for bacterial (parasitic or fungus) overgrowth.

This is a great idea. I would not be surprised if I had something like this going on. Which doc do I request this test from? Or is it something I can do on my own?

The good news and silver lining is that my current bloodwork shows I'm now absorbing vitamin D. I had a range of 11-20 for years despite taking 1000mg of D daily. My level is now a 36. Normal is 25-80.

modiddly16 Enthusiast
modiddly16
Posted

The way I look at it.......if a gluten free diet helps you feel better, do you really need an official diagnosis? It's helpful to know if you have other allergies or anything like that so I understand the testing is necessary but as for the doctor's not making up his mind...if something makes you feel better, to hell with what the doctor says.

I suppose that doesn't work with all diagnosis but with this one I think it probably holds true!

lynnelise Apprentice
lynnelise
Posted

I used to see a doctor who could not accept that eating gluten free solved my problems. He said I was "taking the easy way out" :rolleyes: and that I was probably reacting to fructose and not gluten. Well he ordered the fructose testing and none of the four labs in town had the solution to drink. They all said I would probably have to go to a pediatric hospital because the test isn't commonly given to adults. So I just said forget it, I was only humoring him as it was!

SGWhiskers Collaborator
SGWhiskers
Posted

Like, did you know there's a B12 gum and a liquid calcium/magnesium supplement? My doc had no idea. I went searching for vitamins that I could easily swallow or grab on the go. Calcium pills are ridiculously huge and hard to swallow so I found a liquid. B12 (the kind that dissolves) often contains lactose so I found a gum I can chew that is gluten/soy/dairy free which also freshens! My doc didn't even remember I'm dairy intolerant.

What is the liquid calcium/magnesium supplement called. I get stomach pains from taking the calcium pills and wind up skipping them. I've been searching for a gluten-free/cf liquid calcium. I wouldn't mind the name of the gum either.

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kayo Explorer
kayo
Posted
  • Author
if a gluten free diet helps you feel better, do you really need an official diagnosis? It's helpful to know if you have other allergies or anything like that so I understand the testing is necessary but as for the doctor's not making up his mind...if something makes you feel better, to hell with what the doctor says.

I completely agree and almost didn't even seek a doctor. I did the gluten-free diet and Enterolab testing on my own. However, I'm now glad to have a doctor I can turn too. I'm not getting fully better on the gluten-free diet so I know something else is going on. I know I'm not getting CC'd because my ttg numbers are great. All signs are now pointing to fructose malabsorption and possibly bacterial overgrowth. I've seen a nutritionist and started the low fructose diet and while I seem to be going through a withdrawal (feel like crap) I also see some improvements (loss of water weight, bloating decreased, sinuses are clear, etc). This may be the actual root of my issues.

I never would have figured that on my own since I had never heard of it.

When I wrote this post I was venting, feeling frustrated, etc. feeling like there was no end in sight, no 'thing' I could point to and say, yup, that's it.

Hi SGWhiskers,

The liquid calcium/magnesium is called LifeTime OsteoDesnity and the B12 gum is called BFresh Gum. I got both at Whole Foods. There were a few other brands of the liquid vitamins too. I originally started with a different bran but it contained fructose so I switched.

burdee Enthusiast
burdee
Posted

This is a great idea. I would not be surprised if I had something like this going on. Which doc do I request this test from? Or is it something I can do on my own?

My naturopath (who runs the IBS Treatment Center in Seattle) ordered stool tests initially through Doctors' Data, Inc. (lab) in Illinois. However he found a better DNA Microbial Test (which identifies the gut bugs by their DNA) through Metametrix in Georgia. I suspect you need a holistic/naturopathic doc who offers those kind of tests, but you also might ask a gastroenterolist (who considers intestinal bacteria, parasites and/or fungus as causes of gastro symptoms).

SUE

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