Confusion with my gluten intolerance

by 1972 · February 21, 2014 at 03:57 PM

I have been pretty certain since I began keeping a cleaner diet around a year ago that I have an intolerance to gluten. I immediately dropped 5 lbs when I cut it out and I have noticed since that I have bad reactions when eat it including constipation and bloating to the point of 7 lbs on the scale. I also notice that when I include gluten daily that I am anemic and when eliminate it to once a week or less then my iron levels are perfect.

The interesting thing that has been confusing me is that sometimes I go through periods where I tolerate it fine. For example, this week was the last in summer and I spent most of it with my boyfriend's family. I ended up eating gluten a few times in things such as homemade pizza, beer, etc. The scale is completely normal and I feel great! The only thing that I can think of is that I have been cleaner than normal for the past month and have been eating lots of yogurt. Maybe this is related to bacteria in the gut? Anyone know why sometimes I go through periods of being drastically affected and sometimes not at all?

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6 Replies

0 · February 21, 2014 at 04:37 AM

@CDone @arugulaI did a Prometheus Celiac Seology which is described as "a comprehensive serum antibody profile. There were 5 tests:

Deamidated gliadin peptide antibody IgG ELISA

Deamidated gliadin peptide antibody IgA ELISA

Anti-human tTG IgA ELISA

Anti-endomysial IgA IFA

Total serum IgA

I was told that together these 5 tests can identify definitely whether or not you are Celiac despite being on a gluten free diet. But I think the important point, is that gluten is bad for everyone and people who react FOR SURE should NEVER eat it. I've been GF for 7 years despite a previous inconclusive test. Frankly don't care whether I'm "Celiac" or not :) I know I react and so happy I found out about Paleo from my neighbor who is a researcher who believes all modern disease stems from the ingestion of gluten laden foods.

998 · February 21, 2014 at 03:46 AM

Only about a third of people with celiac disease actually have the old fashioned intestinal issues. Many adult celiacs are *asymptomatic* at time of diagnosis. Anemia that does not resolve after iron supplementation is a frequent issue that leads Drs to finally test for celiac. Note raydawg's response to aother comment: "It's a spectrum, if you have zero reaction and the "shag carpeting" in your gut lining hasn't completely worn away as per a biopsy, they don't count it as celiac. If you wait until there's serious damage done, then you might be labeled celiac. It's not worth waiting for a diagnosis." My recommendation is if you do gluten challenge, make sure you get the EMA test and then find out your numbers exactly. A Swedish study in 2013 indicates any positive EMA test as being highly predictive (96%) of future manifestation of celiac disease even if the patient does not yet fit the damage criteria of official celiac dx. Otherwise, if I were you I would treat myself as if I had celiac disease.

0 · February 20, 2014 at 04:14 AM

I just went through this with my gastroenterologist. You do NOT need to do a gluten challenge (i.e. eat gluten) to be tested. Find a doctor that will test you for the antibody. I haven't eaten gluten for 7 years and I DID NOT have to eat gluten to do the test. BTW I tested negative for coeliac which confused me because I am very reactive. My doc is a coeliac researcher and he explained to me that, while I will never be coeliac, non-coeliac gluten sensitivity is VERY REAL and does cause damage, even if you occasionally cheat and feel fine. If you are sensitive, I would suggest cutting out all gluten and don't allow yourself to cheat!!

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0 · February 17, 2014 at 09:46 AM

There seems to be a confusion over gluten intolerance on this site. I am a coeliac have been since I was 2 years old. I have a gluten sensitivity that WILL SHOW UP EVEN IF I DON'T EAT GLUTEN! Its an antiboy thats always present not just something that comes and goes.

The medical profession will only recognise you as gluten sensitve if you have this antibody but that doesn't mean that gluten isn't harmful to us. My body sees gluten as a poison and reacts in a way to eliminate from my body as quick as it can. An average Paleo person avoiding gluten will feel healty without it in there diet because their body doesn't like it but doesn't see it as an immeidate threat.

Another fact - which will completely contradict what I've just said - is that you can have latent gluten sensativity. My mother was only diagnosed at 70!! She would have shown negative on the blood tests until possibly a year before this. If you feel unwell, have loose stools for a long period of time, loose weight for no reason, then you need to be tested. (Yes yes there are other symptoms but we are all different).

Don't hassle over a diagnosis. Don't make yourselves unwell only to be dissapointed with a negative test result which will likely cause you to rebound into a gluten fest! If you feel healthier avoiding gluten just avoid it!

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560 · August 14, 2013 at 04:21 PM

I too noticed after cleaning up my diet that gluten had a bad effect. The more I eliminated it the easier it got to set me off (constipation and bloating here too, but it can be the opposite for some).

I'm trying to do the "gluten challenge" and eat it daily for a couple months so I can get tested for celiac. It's tough. You'd think I'd gladly indulge but I don't even want it and find myself struggling to get any in my diet.

If you have problems with gluten I'd suggest getting tested too. Ask your doctor about it. If they're like most American doctors they will probably not take you seriously, but celiac is VERY SERIOUS even if your symptoms are mild.

I want to get tested so I can find out if it's okay to get trace contamination from things like soy sauce and seasonings or the occasional cheat. For some, gluten can dramatically increase the chances of developing certain types of cancer. If you can stomach it, take the gluten challenge and get tested. Go back to avoiding gluten if you're negative and eleminate it 100% if you're positive.

It's funny because once you're healthy, it really is a "challenge" to eat as much as the equivalent of 2 slices of bread a day for a couple months. I keep missing days.

2282 · August 13, 2013 at 01:44 PM

Gluten intolerance manufests itself in many ways, some of which can be easily overlooked. N=1 even if I don't have a strong 'gut' reaction right away to gluten (perhaps because avoiding it allows your stomach to start to heal), there are usually more subtle symptoms present at first. Maybe a light bloat, stuffy nose, a little brain fog, more tired the next day or something small at first.

It may not seem like a 'big deal' but if you have a gluten intolerance/allergy you should just avoid it no matter what. Having a slice of pizza may not seem like much, but if you have an allergy you are doing your body a great disservice and could be setting yourself back without even knowing.

Why would you want to make yourself anemic (as you say gluten effects you in this way)? Just to have a beer? It's not worth it IMO.

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