Sensitivity Vs. Intolerance?

[wooya]

Hello all... I've read a bunch of somewhat similar stories on this forum but am hoping I can get some insight from you guys.

I generally feel like a pretty healthy person - if I do have any kind of gluten issues, I'm very lucky not to be going through what some of you seem to be. But my doctor's been trying to figure out why I'm mildly anemic. My iron stores are apparently okay but I'm not absorbing iron from supplements as well as I should, so she's got me an appointment with a haemotologist in July.

She asked me if I get diarrhea, which I occasionally do but have never really been able to trace it back to anything... it never occurred to me that I might be gluten intolerant since I can eat bread & baked goods just fine without it bothering me. So she decided I should get a tTG just to be on the safe side, and I got that done last week.

Over the past week I started reading about celiac, and was surprised to find how many peoples' stories here sound like my own... anemia... no major symptoms, just random & intermittent digestive upset, not always correlated to the same foods... northern European descent... and while I'm not usually prone to reading about an ailment and then thinking I have it, but the end of the week I was pretty convinced I was gluten intolerant. It seemed obvious. I had two reactions this week to fairly gluten-heavy foods, and thought, well, that's it then.

But my tTG came back solidly negative. She said anything < 20 is normal... I'm at 5. I also had a stool test done for intestinal bleeding, and that was negative too. B12 is normal, glucose is normal, if that means anything. Other than the anemia & occasional (bi-weekly, maybe) digestive woes, I seem to be in okay shape.

Part of me is relieved, but the rest is uncertain... Gluten intolerance seems like a nice pat way of explaining two otherwise unrelated symptoms at once. I can't decide whether I'm just jumping to conclusions (gluten intolerance DOES seem to have so many possible symptoms that it could be easy to self-diagnose incorrectly) or whether I should really pursue this seriously.

I was somewhat prepared to start a gluten-free diet today if necessary, but now I don't think I should. If the doctor in July wants to look into gluten intolerance further, I know I shouldn't be gluten-free or it'll affect the tests. And dammit, I don't WANT to go gluten-free. I love cakes and cookies and bread and soy sauce. I love eating strange eclectic meals at unusual restaurants. If I'm told I have to give it all up, then yes, I can do that... but I'm not so sure I want to do it unless I've got some real evidence that I have to.

I guess my question is, what's the difference between gluten sensitivity and gluten intolerance? Under what circumstances could my tTG possibly be normal but I could still react to gluten? What other avenues should I maybe be considering *besides* gluten - other problems can cause anemia and dietary reactions independently...?

Thanks for any advice you can offer!

[Lesliean]

You sound like you are on the right track to me, for what's that worth! You are going to ask your doctor about pursuing this possiblity as well as ask what else could be causing your symptoms. You also know that once you go off gluten the tests will become negative too. So, good luck to you! Here is a bit of a ramble on the test you had, the need for more, and addressing intolerance.

This article is specifically about the reliability of tTg:

https://www.celiac.com/st_prod.html?p_prodid=1070

It's unusual that your doctor bothered to do only one test. The Celiac panel should include more blood tests. I first think you might investigate getting a full Celiac panel. If you are going to do it, do it right. -see:

Open Original Shared Link

Here is an article on the predictive value of the blood tests:

Open Original Shared Link

It is easily possible to miss Celiac disease using blood work. The tests can have a low sensitivity. That is why they do several different tests. Unfortunately, it also easy to miss Celiac disease on a biopsy unless a lot if the small intestine is damaged. So if you do have it and you do wait and repeat testing years from now there is a good chance you will show positive in the future but you will also be sicker from eating gluten. And it is always worth checking out all possible reasons for your symptoms. I'll leave the other possibilities to the next writer.

This link has numerous articles including one titled Allergy vs. Intolerance, What's the Difference?

https://www.celiac.com/st_sresults.html

Intolerance, or Celiac disease is not always positive through conventional tests and that is why my personal preference is stool testing through Enterolab. I just think they have less false negatives. If you are unable to break down gluten and about 1/133 people do have Celiac disease, then you will continue to have worsening symptoms that could affect your whole body and not just your gut. My serology tests were negative but the Enterolab tests showed a genetic tendency towards the disease and since I improved dramatically when I began eating gluten free I had to conclude that I have Celiac disease. Enterolab called mine gluten sensitivity because the DQ 1 genes tend to present neurologically. The prescription though was the same-GFD for life.

It can also be hard to try a GFD to see if it helps relieve symptoms unless you can be vigilant and well-read about what to avoid during your trial. Gluten can be in lip balm, natural flavorings, carmel coloring, aspirin and other medications, as well as cross contamination from the maufacturer adding flour to products like corn chips (Frito-lay) or not washing equipment in between uses, or crumbs on the cutting block of your kitchen or crumbs in the jelly jar... It does get so much easier as time goes on and also much more noticeable what you slip up on when you do.

Good luck and I know others will be writing to you,

Leslie

[Peaches503]

Your story sounds a LOT like mine. In the past, I have been mildy anemic, had depression and anxiety episodes, had my thyroid tested 3 times (negative all 3), had glucose levels, enzyme, and vitamin levels all test ok. I have also never noticed any intolerance to specific foods and did not suffer symptoms up until about a month ago. However, I did suffer from occasional diarrhea and constipation, but usually just chalked that up to stress, since everything else seemed ok.

I also did not lose any extreme amount of weight. It wasn't until recently that I began having mild symptoms and extreme constipation that I had a celiac blood test done. My doc said that though it was not a strong negative, it didn't matter. I still had the antibodies.

The only thing I could suggest for you would be to have the test done again at a time when you are CERTAIN that you have eaten foods with gluten in them. Perhaps your test came back negative for the same reason mine came back only "slightly positive". I hadn't been eating a lot of carbs, just some cereal, and it seems as though if I hadn't eaten a bowl of cereal that morning before being tested, I might have tested negative too. So, I guess I would recommend getting a second opinion, having the test done again, and making sure you've eaten just a little something with gluten in it. Don't overdo on the gluten, just incase you are intolerant. Hope this helps.

-Peaches

[wooya]

Thanks so much for all your advice - I'll be pouring over the reading material to see what I can learn. That's fascinating about the weak tTG results - my doctor obviously didn't get that memo, because when I asked what the odds were of false negatives & positives, she found a paragraph about it being around 90% accurate. Still, I give her credit for even thinking of celiac for me in the first place.

Here's another variation on the sensitivity question... do people usually have reactions to gluten in different forms, or different proportions? I've been testing my reactions to a variety of things I know have gluten in them, and so far I've had bad reactions to meals that are mostly heavy, gluten-concentrated, and warm (pasta, stuffing, buckwheat pancakes). But then tonight some friends brought over a massive loaf of fresh bread and some beer, and that plus a salad was all I ate. I feel perfectly fine, and that was an undeniably large load of gluten. Confusing.

Perhaps what I'll do between now and July is do a two-week gluten-free diet just to see if I react to any foods during that time. Hopefully that wouldn't be enough to throw off the tests if I stop it a month before I get more blood work done. Then I'll ask the hematologist to do the other tests you mention. I don't think I could get Enterolab tests since I'm in Canada.

In the meantime, I'm trying not to get too fixated on the notion... but I couldn't help noticing that there was nothing I could've eaten at dinner tonight if I was on a gluten-free diet. Croutons in the salad, y'know...

[Guest ajlauer]

I've had bad reactions to meals that are mostly heavy, gluten-concentrated, and warm (pasta, stuffing, buckwheat pancakes). But then tonight some friends brought over a massive loaf of fresh bread and some beer, and that plus a salad was all I ate. I feel perfectly fine, and that was an undeniably large load of gluten.

Is it tough to pinpoint. Have you been tested for food allergies? You could be allergic to something in the pasta and whatnot, that isn't in the bread. Or, it could be combos of ingredients that react strong enough for you to notice. For example... there could be some barley AND wheat in the pasta.... or eggs and wheat.... something along those lines. With all the different *possible* things that it could be, it is hard to figure out on ones own.

[KaitiUSA]

You could also just not have symptoms with the small amounts but it still could be causing damage. You do not have to have symptoms in order for you to have celiac. The more you are off gluten the more sensitive to it you become. I was not very sensitive at first but now I am extremely sensitive to any amount. Good luck

[skbird]

Hi! If you are interested in EnteroLab I have read that you can go through them even if you're in Canada. Their website is www.enterolab.com. There is also a lot of good information there about gluten sensitivity.

Good luck!

Stephanie