Diagnosed 2 Years Ago Only By Blood Test, Could It Be False?

[HS7474]

I was tested back on November 13th, 2008. I didn't think much of it since my doctor called and said "You have celiac disease". I've been living gluten-free since. However, I've been having the same symptoms I had before: Gas and bloating. I had a biopsy done in May of last year and it came back negative, which isn't surprising since I've been gluten-free. I called my doctor today to get the results of the blood test that they used to diagnose me. They said it was the "Tissue transglutamine, IGA" - not sure what I spelled correctly or incorrectly there The results came back abnormal >100 with <10 being normal. I think I felt better for awhile but for the past year, perhaps, still have gas and bloating. I don't recall having any other symptoms except perhaps irritability. I read a lot that people have muscle pain, headaches, etc.

I feel fine today but felt pretty badly yesterday. Really, the best connection I can find for my issues is my gum. I chew gum every day, typically sugarfree. I know that sugar alcohols can cause gastro problems but it seems to be an immediate reaction and it doesn't seem to end. As well, I just realized I have not had my fat free Nestle hot cocoa mix today (processed on shared equipment).

I'm just wondering if there's another test I should have done, if you guys think that yes I definitely have celiac, if my gum is causing the problems, etc. Any opinion would be greatly appreciate.

As a side note, I did post something similar to this on the "coping with" forum and did not receive many replies; I also did not have my blood test results handy. Please let me know if this should be deleted as a duplicate.

Thank you!

[divamomma]

Some people are more sensitive than others. Some can eat the products made on shared equipment and products that say "may contain wheat" Others can not.

I have heard that gum base may have gluten in it and it is best to contact the manufacturer.

You have a positive blood test and symptoms of celiac. It sounds to me like you are being glutened somewhere. Watch out for cross contamination too. Even a crumb can cause symptoms/damage.

[shopgirl]

Some people are more sensitive than others. Some can eat the products made on shared equipment and products that say "may contain wheat" Others can not.

I don't think any Celiacs should take a chance on something that says "May contain wheat." Shared equipment, that's your own discretion. But if it says it may contain wheat, it's going right back on the shelf for me.

[LDJofDenver]

I was tested back on November 13th, 2008. I didn't think much of it since my doctor called and said "You have celiac disease". I've been living gluten-free since. However, I've been having the same symptoms I had before: Gas and bloating. I had a biopsy done in May of last year and it came back negative, which isn't surprising since I've been gluten-free. I called my doctor today to get the results of the blood test that they used to diagnose me. They said it was the "Tissue transglutamine, IGA" - not sure what I spelled correctly or incorrectly there The results came back abnormal >100 with <10 being normal. I think I felt better for awhile but for the past year, perhaps, still have gas and bloating. I don't recall having any other symptoms except perhaps irritability. I read a lot that people have muscle pain, headaches, etc.

I feel fine today but felt pretty badly yesterday. Really, the best connection I can find for my issues is my gum. I chew gum every day, typically sugarfree. I know that sugar alcohols can cause gastro problems but it seems to be an immediate reaction and it doesn't seem to end. As well, I just realized I have not had my fat free Nestle hot cocoa mix today (processed on shared equipment).

I'm just wondering if there's another test I should have done, if you guys think that yes I definitely have celiac, if my gum is causing the problems, etc. Any opinion would be greatly appreciate.

As a side note, I did post something similar to this on the "coping with" forum and did not receive many replies; I also did not have my blood test results handy. Please let me know if this should be deleted as a duplicate.

Thank you!

Have your doctors done any follow up blood tests to see that your antibody levels are coming down? If they're not, you're still ingesting gluten, from somewhere (be it the gum, an old toaster, shared kitchen counter space, medications, or products that aren't safe).

I'm not a medical person but I've never heard of getting a false positive. False negatives, yes, for various reasons, but positive blood panel is usually just that, positive for celiac disease.

I think my first year or so after diagnosis I ate things made on shared equipment. But the longer I go, and the longer it took to bring my levels down, the more I've eliminated things like that. I've gotten much pickier and my follow up blood work got progressively better.

On the feeling better side... Many things resolved very quickly, some took longer. And the longer I was gluten free, the more severe my reaction to gluten has become. That could be what you are experiencing.

Like the other member mentioned, processed on shared equipment is a personal choice. But it's one I now say no to. Trace amount here, trace amount there... Even my GI doc says the problem is it all adds up. How many times in a day or couple days or week? They start to add up to something more than a trace if ingested too close together.

Food for thought.

[cassP]

many of us have additional food intolerances... especially to all those fake fats & fake sugars & corn byproducts-> especially in all those gums (sorbitol, manitol, etc etc...)

i have GREATLY reduced the amount of sugar free gum and mints i use- and it seems to have helped. they used to give me intestinal gurgles nonstop. i now use a lot of sugar free gum from whole foods that's gluten free- and mostly less harmful ingredients. i sometimes use those breath freshener strips too- if i use too many, my stomach will hurt.

i work as an LMT, so i gotta keep my breath fresh... i try to brush my teeth more, use mouth wash.... sometimes when i stick a piece of gum in my mouth-> i chew for a bit, freshen up, and then i spit all that juice out- no need to swallow it and get diarreaha feelings... so annoying.

my cousin gets partial seizures from aspartame- so she's been ordering GLEE gum.

good luck

[Looking for answers]

You could have other intolerances as well. For instance, recently, out of the blue, avocados started giving me problems. Add that to my nut-, dairy-, soy- and grain-free diet, and I'm about to scream. But my stomach is feeling much better.

[mushroom]

I would put myself in the suggesting-further-intolerances camp. I was flabbergasted how many other things I ended up with an intolrance to - only revealing themselves once the gluten mask was removed.

[Roda]

I did great for the first year I went gluten free then pretty much all of 2010 was miserable. I went on a strict elimination diet of fresh foods. I was at a point that my GI said that based on my still elevated Igg gliadin antibodies, the constant unrelenting diarrhea and steatorrhea that it was a good indication that my celiac was flaring up. I also had gastritis and an ulcer show up on my repeat EGD. He wanted me to take a month+ of steroids but I didn't want to. I explained to him what I ate and how I watched for cc and he said it seeemed like I was doing things right. So he prescribed me creon to help with my digestion and I eliminated all processed foods even gluten free ones. I started this in August 2010 and by three months I had a noticible change for the better. I was able to stop the creon in mid Nov. and I only have issues with steatorrhea/diarrhea if I intake to much fat (I have a underfunctioning gallbladder that this flare made worse). I realized from this that I was reacting to sesame and all of Bob's Red Mill products. I pretty much used those from day one of diagnosis. I personally feel that low levels of CC from their gluten free oats(I react strongly to certified gluten free oats) eventually lead to my body reacting and it took longer than if I was to overtly eat gluten on purpose. I would start with the fresh foods first and give it several months. If you still have issues then look at other food intolerences in addition to gluten. I know the malabsorption and my celiac flare up did more damage to my gallbladder because it has been acting up more. As long as I monitor my fat intake it is manageable. I'm going to go in Feb. for another work up on it. Good luck figuring it out.

[nora-n]

Roda, here in Scandinavia it is known that at least 15% of celiacs do not tolerate the gluten-free oats.

And, on the forums there are some people from time to time who report not tolerating some other starches, like corn or whatever. There are even webpages about that. The mainstream celiacs do not agree, but there are enough reports to make one think it is possible.

[cahill]

I would put myself in the suggesting-further-intolerances camp. I was flabbergasted how many other things I ended up with an intolrance to - only revealing themselves once the gluten mask was removed.

I agree

[Roda]

Roda, here in Scandinavia it is known that at least 15% of celiacs do not tolerate the gluten-free oats.

And, on the forums there are some people from time to time who report not tolerating some other starches, like corn or whatever. There are even webpages about that. The mainstream celiacs do not agree, but there are enough reports to make one think it is possible.

The main thing I know is that I feel so much better not eating any of those products. I am tolerating Ener G products and Betty Crocker gluten free mixes alright. I'm still not 100% but compared to this time last year I'm doing great. I knew at 7 mo post diagnosis I couldn't handle the gluten free oats. I never gave it a thought about the cc from them in those products until Aug. I guess better late than never!

[HS7474]

Thank you all so much for your replies!

Today is my second day without the gum or the cocoa. I had a couple of pieces of gum last night and think my belly started to react - I'm doing my best to go cold turkey with the gum but I do have something of an addiction to it!

Is there any way to test for other intolerances that gives accurate results, aside from elimination diets? I have very little willpower when it comes to avoiding foods (see gum addiction, above ). I also tend to eat very few process things. But I get the feeling that it may be the sugar substitutes. I'll have to monitor them more closely. I wonder if their concentrations vary from gum to gum.

I do believe I have an oat sensitivity so I've avoided them for quite awhile. Hard to say for certain since I obviously have something else wrong too.

Out of curiosity, is dairy the most common intolerance among Celiacs? I don't believe I'm one of the fortunate few who can handle oats, e

[cahill]

Thank you all so much for your replies!

Today is my second day without the gum or the cocoa. I had a couple of pieces of gum last night and think my belly started to react - I'm doing my best to go cold turkey with the gum but I do have something of an addiction to it!

Is there any way to test for other intolerances that gives accurate results, aside from elimination diets? I have very little willpower when it comes to avoiding foods (see gum addiction, above ). I also tend to eat very few process things. But I get the feeling that it may be the sugar substitutes. I'll have to monitor them more closely. I wonder if their concentrations vary from gum to gum.

I do believe I have an oat sensitivity so I've avoided them for quite awhile. Hard to say for certain since I obviously have something else wrong too.

Out of curiosity, is dairy the most common intolerance among Celiacs? I don't believe I'm one of the fortunate few who can handle oats, e

with the gum ,most contain High fructose corn syrup ( Corn) in addition to the sugar substitutes. Another thing to consider is some gum contains soy.

I was able to eliminate soy from my diet and then challenge it ,,,It didnt take long or much to know it was an issue .. I have also had success finding other intolerances (corn,nightshades ect) this way.. one at a time , not as drastic or restrictive as an elimination diet( where you cut out practically everything and slowly add one food at a time)

[Matisse]

I was tested back on November 13th, 2008. I didn't think much of it since my doctor called and said "You have celiac disease". I've been living gluten-free since. However, I've been having the same symptoms I had before: Gas and bloating. I had a biopsy done in May of last year and it came back negative, which isn't surprising since I've been gluten-free. I called my doctor today to get the results of the blood test that they used to diagnose me. They said it was the "Tissue transglutamine, IGA" - not sure what I spelled correctly or incorrectly there The results came back abnormal >100 with <10 being normal. I think I felt better for awhile but for the past year, perhaps, still have gas and bloating. I don't recall having any other symptoms except perhaps irritability. I read a lot that people have muscle pain, headaches, etc.

I feel fine today but felt pretty badly yesterday. Really, the best connection I can find for my issues is my gum. I chew gum every day, typically sugarfree. I know that sugar alcohols can cause gastro problems but it seems to be an immediate reaction and it doesn't seem to end. As well, I just realized I have not had my fat free Nestle hot cocoa mix today (processed on shared equipment).

I'm just wondering if there's another test I should have done, if you guys think that yes I definitely have celiac, if my gum is causing the problems, etc. Any opinion would be greatly appreciate.

As a side note, I did post something similar to this on the "coping with" forum and did not receive many replies; I also did not have my blood test results handy. Please let me know if this should be deleted as a duplicate.

Thank you!

Sugar free gum has sorbitol. The sorbitol can cause the symptoms you are describing. They happen to me when I used to chew gum. Here's some information on sorbitol.