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Confusion with my gluten intolerance

by (1974)
Updated about 21 hours ago
Created August 13, 2013 at 12:45 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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997 · February 21, 2014 at 3:57 PM

Example, the inflammatory markers are used to monitor celiac patients after starting a gluten free diet to make sure their body is responding well and that they are diet-compliant or if gluten is sneaking in some way. It *can* take some months for all the numbers to decline but I am diagnosed with celiac disease and my blood tests were always negative. The tests have never been useful to me.

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26182 · February 21, 2014 at 3:43 PM

"Prometheus Celiac Seology is investigational as an alternative to biopsy for assessing mucosal damage in individuals with celiac disease" -- Key word there is WITH -- i.e. people who were already clinically diagnosed with celiac disease.

"Together, these genetic, serologic, and inflammatory markers can be utilized as a useful adjunctive diagnostic tool to aid clinical practice." Again, key words are ADJUNCTIVE and AID

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:30 PM

My small collection of abstracts on celiac in non-typical alleles

DQ9 risk factor 2012 http://www.ncbi.nlm.nih.gov/pubmed/22342873 celiac in low risk alleles http://www.ncbi.nlm.nih.gov/pubmed?term=21292306 amerindian celiac Chile http://www.ncbi.nlm.nih.gov/pubmed/21505366 more celiac males negative for DQ2&8 http://www.ncbi.nlm.nih.gov/pubmed/18177450

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:28 PM

"Please note that in order for the blood tests to be helpful to your doctor, you must be eating a normal, gluten-containing diet."

http://www.questdiagnostics.com/dms/Documents/Other/celiac/celiac-gluten-diagnostics.pdf

It's my understanding that *none* of those tests are accurate if you are not eating gluten (except total serum IgA, that's to see if you have IgA deficiency). If you were eating "gluten-lite", your Dr may have thought it was worth it? Even the current genetic test can't completely rule it out, there *are* rare exceptions. Some people have celiac without the genes.

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:37 AM

Of course you tested negative for celiac disease because you were not eating gluten. You may well have celiac but without actual ingestion of gluten, your body will not produce the ema or ttg that Drs use as the starting point for celiac diagnosis. NCGS is quite real and I'm very glad your Dr recognizes this. Your doc sounds great except for giving you the idea that you'd be producing the antibodies after 7 years glutenfree. Which antibody was he/she referencing?

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17344 · February 21, 2014 at 1:10 AM

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. If you must have a test, there are companies that test most of the antibody types for gluten that do better than the standard test, but you already know there's a reaction, so no need.

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26182 · February 20, 2014 at 1:08 PM

Only 5 - 10% of carriers of HLA-DQ2 and HLA-DQ8 have celiacs disease. Genetic testing is a good first look, but is not definitive.

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26182 · February 20, 2014 at 2:07 AM

Truth...

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26182 · February 20, 2014 at 2:07 AM

so lying to her is the way to help?

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5356 · February 19, 2014 at 8:36 AM

"A new person will not understand all the fancy shit words and so you can go to fuck. I am not returning here." - Eeepeeep, 2014.

I don't care what anyone says...I'm sending this to Hallmark, they NEED to know...the feels...

Medium avatar
0 · February 19, 2014 at 7:26 AM

Well I am sorry but did you read the damn question that was posted???? Did you not see that she was NEW to this gluten free lark??? Then when I reply TRYING TO HELP you rip it out of me!!! A new person will not understand all the fancy shit words and so you can go to fuck. I am not returning here.

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690 · February 18, 2014 at 7:40 PM

@CDone Also, I figured your comment

'when you report a comment, who do think the message goes to?'

went right over her head. Thanks for all your hard work. cheers Bob

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690 · February 18, 2014 at 7:34 PM

@CDone I totally agree that ignorance is not something to hold on to. But based on her answer, her follow up comments and her lack of response to your offer of explanation....I'm tending to see that condition as a long term thing. :( cheers

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26182 · February 18, 2014 at 7:26 PM

I know, but I was trying to be helpful, and she reported my comment. I never knew ignorance was something to hold on to.

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690 · February 18, 2014 at 7:09 PM

@CDone@eeepeeep is clearly 'new' around here. :)

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26182 · February 18, 2014 at 1:22 PM

Also, when you report a comment. who do you think the message goes to?

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26182 · February 17, 2014 at 6:27 PM

sorry, I was certain that someone with celiacs would be well aware of gluten sensitive enteropathy. As far as big words, which one didn't you understand and I will explain more.

Medium avatar
0 · February 17, 2014 at 5:12 PM

I don't know about dangerously wrong. How confused do you want more people to become by throwing around big words and abreviations that you don't explain.

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26182 · February 17, 2014 at 1:18 PM

You may have coeliac disease -- but you are dangerously wrong about how it affects your body. You have the same anti-bodies that everyone else does (or many of the same, there are individual differences). The difference is that in the presence of gliadin, your anti-bodies attack your bowels for no apparent reason (thus massive inflammation). If it were simply different anti-bodies, a simple blood test could identify the presence of coeliac.

The second part, your mother's diagnosis, is GSE

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2318 · August 13, 2013 at 3:00 PM

It is odd, but like I mentioned maybe it's effecting you in subtle ways? I have had similar experiences but tend to notice little things (minor) the next day or so. Not that it's any of my business, but why not tell his mom/family that you are gluten intolerant? I'm sure that she would happily make gluten free meals for you. My hubbys mom is chinese (gluten alert!) and makes many delicious chinese style family meals that are safe for me to eat. We get to have family dinners every sunday just like we normally would but I don't have to worry about any issues.

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1974 · August 13, 2013 at 2:06 PM

Having a beer won't make me anemic. I only get anemic if I eat it daily. I completely agree that if I was that sensitive to it that I would become anemic from a beer then I would be very careful. I strive to find a balance between keeping a very healthy diet and socializing. When my boyfriend's mom makes pizza then I would rather eat a couple slices and enjoy eating dinner with his family. The confusing part to me is that it seems to come and go in waves so I was just wondering if anyone else has experienced this or know what it could be from.

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6 Answers

58a59778e2a8f29ca3df8e8fdd5354d0
0
0 · February 21, 2014 at 4:37 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.

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:28 PM

"Please note that in order for the blood tests to be helpful to your doctor, you must be eating a normal, gluten-containing diet."

http://www.questdiagnostics.com/dms/Documents/Other/celiac/celiac-gluten-diagnostics.pdf

It's my understanding that *none* of those tests are accurate if you are not eating gluten (except total serum IgA, that's to see if you have IgA deficiency). If you were eating "gluten-lite", your Dr may have thought it was worth it? Even the current genetic test can't completely rule it out, there *are* rare exceptions. Some people have celiac without the genes.

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:30 PM

My small collection of abstracts on celiac in non-typical alleles

DQ9 risk factor 2012 http://www.ncbi.nlm.nih.gov/pubmed/22342873 celiac in low risk alleles http://www.ncbi.nlm.nih.gov/pubmed?term=21292306 amerindian celiac Chile http://www.ncbi.nlm.nih.gov/pubmed/21505366 more celiac males negative for DQ2&8 http://www.ncbi.nlm.nih.gov/pubmed/18177450

3ce6a0d24be025e2f2af534545bdd1d7
26182 · February 21, 2014 at 3:43 PM

"Prometheus Celiac Seology is investigational as an alternative to biopsy for assessing mucosal damage in individuals with celiac disease" -- Key word there is WITH -- i.e. people who were already clinically diagnosed with celiac disease.

"Together, these genetic, serologic, and inflammatory markers can be utilized as a useful adjunctive diagnostic tool to aid clinical practice." Again, key words are ADJUNCTIVE and AID

94480caec9fbbaacc386d86a45efa720
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997 · February 21, 2014 at 3:46 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.

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0 · February 20, 2014 at 4:14 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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17344 · February 21, 2014 at 1:10 AM

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. If you must have a test, there are companies that test most of the antibody types for gluten that do better than the standard test, but you already know there's a reaction, so no need.

94480caec9fbbaacc386d86a45efa720
997 · February 21, 2014 at 3:37 AM

Of course you tested negative for celiac disease because you were not eating gluten. You may well have celiac but without actual ingestion of gluten, your body will not produce the ema or ttg that Drs use as the starting point for celiac diagnosis. NCGS is quite real and I'm very glad your Dr recognizes this. Your doc sounds great except for giving you the idea that you'd be producing the antibodies after 7 years glutenfree. Which antibody was he/she referencing?

3ce6a0d24be025e2f2af534545bdd1d7
26182 · February 20, 2014 at 1:08 PM

Only 5 - 10% of carriers of HLA-DQ2 and HLA-DQ8 have celiacs disease. Genetic testing is a good first look, but is not definitive.

Medium avatar
0
0 · February 17, 2014 at 9:46 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!

3ce6a0d24be025e2f2af534545bdd1d7
26182 · February 17, 2014 at 1:18 PM

You may have coeliac disease -- but you are dangerously wrong about how it affects your body. You have the same anti-bodies that everyone else does (or many of the same, there are individual differences). The difference is that in the presence of gliadin, your anti-bodies attack your bowels for no apparent reason (thus massive inflammation). If it were simply different anti-bodies, a simple blood test could identify the presence of coeliac.

The second part, your mother's diagnosis, is GSE

Medium avatar
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598 · August 14, 2013 at 4:21 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.

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2318 · August 13, 2013 at 1:44 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.

5b9a25a1a676397a25579dfad59e1d7b
2318 · August 13, 2013 at 3:00 PM

It is odd, but like I mentioned maybe it's effecting you in subtle ways? I have had similar experiences but tend to notice little things (minor) the next day or so. Not that it's any of my business, but why not tell his mom/family that you are gluten intolerant? I'm sure that she would happily make gluten free meals for you. My hubbys mom is chinese (gluten alert!) and makes many delicious chinese style family meals that are safe for me to eat. We get to have family dinners every sunday just like we normally would but I don't have to worry about any issues.

2e777bbcd49262eb31a24f821abec6bc
1974 · August 13, 2013 at 2:06 PM

Having a beer won't make me anemic. I only get anemic if I eat it daily. I completely agree that if I was that sensitive to it that I would become anemic from a beer then I would be very careful. I strive to find a balance between keeping a very healthy diet and socializing. When my boyfriend's mom makes pizza then I would rather eat a couple slices and enjoy eating dinner with his family. The confusing part to me is that it seems to come and go in waves so I was just wondering if anyone else has experienced this or know what it could be from.

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