I don't think I became more sensitive, but I think my reaction became more obvious. Before I was diagnosed I was constantly feeling poor - it was my normal. After being gluten-free for many months, illness was no longer my normal so if something bothered me, it was much more obvious. KWIM?
For example, when I had a stomach ache after almost every meal, some major cramping was not unusual. Now, if I get that pain, it really stands out because I don't have that high background pain level.
I don't think my gluten sensitivity changed, just my reaction and/or how I perceived that reaction.
Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/ She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).
She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions… she specifically mentioned severe acid reflux or food allergies. So my daughter's result could either be from one of those, or it could in fact be *early* celiac.
So the plan is to keep a food diary for at least a week, along with noting symptoms, etc. then continue on a regular diet for 6 months and then test again. If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs. If her symptoms worsen, we do the labs closer to the 3 month mark.
I wanted to update for anyone who might find themselves in a similar situation
Of course I wish I had every answer now, but this is the way things go I suppose… one step at a time. I can wait for 6 months
Huh. I thought the EMA IgA had about the same specifity as the DGP IgG but it's a bit tougher for kids to get a positive on that one as it tends to be positive once the disease is more advanced. It's a very similar test to the tTG IgA and is rarely positive if the tTG IgA is negative - I think I've only seen that around here once in the last two and a half years that I've been hanging around.
Even if the DGP IgG is "only" 95% specific to celiac disease, I would think she would be looking at celiac disease as the culprit rather than acid reflux and food allergies. I know the ttG IgA can (5% of the time) have a weak positive caused by thyroiditis, diabetes, crohn's, colitis, chronic liver disease, or a serious infection. It tests fora possible attack to the endomysial layer of the intestines and other health issues can cause some damage similar to celiac disease. The DGP test (as I understand it - but I'm not an expert) is positive when the body reacts to a deaminated gliadin peptide, which I believe is an artificial gliadin/gluten - the patient is reacting to gliadi/gluten.... would think that would be pretty specific.
But I'm not an expert.
I just get frustrated when doctors want people, especially children, to continue to damage themselves, to an even greater degree, so they can get a positive test result and make the "official" diagnosis. Six months is a long time to purposefully make a child ill. I think a better tack would have been to try the gluten-free diet for 6 months, while keeping a food and symptom journal, and then retest all the tests to see if they have gone down, even the negative ones. If they go down, that's an answer too and you've avoided an extra 6 months of poor health and growth.
A few more articles, in case you like to read this stuff too:
I think those are enough reasons to get her tested. Bring that list to the doctor and ask for the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA and total serum IgA. Don't have her go gluten-free until after all testing is complete.
True, the symptoms could be ampliphied from my frustration. So they can usually just see the damage during the Endo without taking a biopsy? I was not aware. I'm just tired of feeling like this with no answers. I know a lot of folks go years though.
No they usually can not see the damage visually during an endoscopy. There are often signs of inflammation but the vast majority of celiacs need a biopsy for their damage to be seen.
Hang in there. Many of us have had our problems brushed off or were told it's all in our head. I almost think it should be a sign of celiac disease. People often come around once they see you feeling and looking much better after you've been on the gluten-free diet a few months.
If all the tests come back negative, don't forget that it could be non-celiac gluten sensitivity (NCGS) which has almost all of the same symptoms as celiac disease, minus villi damage and the DH skin rash. There are a fair number of people with NCGS around here who had symptoms more severe than mine - it's not a thing to be ignored.
You are 40% over and above the normal range... doesn't seem that weak to me. Yes, some of us had really high tests, but many did not - that's part of the reason this forum is so popular is because the testing can be soooo confusing. There are also those out there who had completely negative blood tests but a positive biopsy. And then there is the reverse where you get a negative biopsy but positive labs....
I very rarely see someone whose lab results all scream "Celiac!" It's definitely the minority. LOL
The OP asked this: "I've read that people who are super-sensitive like me can sometimes react to eggs if the hens were fed gluten. Have any of you found that there some truth to this?"
I answered with my personal experience. I reacted to eggs. Later I found that I can eat pasture fed eggs that don't get supplemental feed in the summer and I freeze these for the winter.
Did I do something wrong?
I think the disagreement is coming from the fact that you were not reacting to gluten in an egg (because as far as tests can find, gluten is not there) but to the egg itself. The chicken that made that egg was eating grains (with gluten in it) and that resulted in an egg that did not agree with you, but it is not because you were reacting to gluten. It is an intolerance to the egg from a grain fed chicken but not a gluten reaction. It's just like the fact that I feel pain when I eat apples but it's not because my apple rolled on flour on the grocery conveyor belt or because wheat was in the compost. KWIM?
So I guess technically someone who considers themselves super sensitive (although I often consider it super-reactive rather than super sensitive) could react to eggs from gluten fed chickens, but it's not a gluten reaction, just like some will react to apples or tomatoes or coffee - it's not a gluten reaction (although in the short term it feels identical to me).
The tTG IgA is the most common test. It looks negative but 1 in 20 celiacs are low in IgA and that causes false negative tests. You should see if you can get the total serum IgA done, or even look back through past labs to see if it was done. Even if you IgA levels are normal, the tTG iGA can miss up to 25% of celiacs.
The AGA IgG is not a great test. If you look on page 12 of this report by the World Gastroenterology Organisation, you can see that the sensitivity of the AGA IgG can be as low as 17%! That means it can miss (worst case scenario) up to 83% of all celiacs. The DGP IgG (deaminated gliadin peptides) is a much better, but similar test.
If you can get more tests (even the endoscopic biopsy), I would do it. If not, you should consider trying the gluten-free for 6 months. At this point you suspect celiac disease or non-celiac gluten sensitivity (NCGS), and despite the two negative tests, it could still be either one of those causing your problems. If you are sure testing is done, go gluten-free and keep a food and symptoms journal. Symptoms can change so slowly that you barely notice so keeping a food journal can help. There is also the added benefit that if another food is causing your problems, it may help you identify the problem.
You could always try celiac disease testing. There is a (small) chance that you would still have high autoantibody levels after being gluten-free, especially if you have not been 100% gluten-free (meaning frequent accidents, if that applies to you). In some people the autoantibody levels can stay high for quites some time, especially the tTG IgA and tTG IgG. The EMA IgA, DGP IgA and DGP IgG tend to go down a bit faster.
When googling for answers, use our discussion board as a springboard into better research. We make mistakes on here, so don't take everything we say as fact. Do more gogling but use medical websites to find the harder facts, or medical journal articles. The cauliflower is one example, that usually is only a problem for some people with Hashimotos (which 10-15% of celiacs have) but I have Hashi's and still eat it... when I have to. LOL
What I mean is that we have many members here and in such a large group you will find many issues that may or may not be related to celiac disease, but not everyone has all of those issues. Some around here have issues with strawberries, others with soy or high histamine foods. Three is a lot a variation.
Dairy is a good one to look out for though. About 50% of celiacs, when they first go gluten-free, are lactose intolerant because the villi which makes the enzyme lactase, has been damaged. Many regain the ability to consume dairy after 6 months or a year or two.
A food and symptom journal is a good idea when you are dealing with multiple sensitivities like you are. It might help you see patterns a little bit better.
My main advce would be to hang in there. About 70% of celiacs START to notice improvements after two weeks on the diet, and that's just a start. It can take months to years before you truly feel well. I have been gluten-free for 2 years and I still have some issues that I am dealing with. It takes a long time. Hang in there.
ps. As a favour, could you not use the small or different fonts? I have poor eyesight, and I was tired yesterday so my jittery eyes could not focus on the fonts. Thanks
They have added an endoscope for her not too. She wasn't that thrilled about that but I told her it was pretty easy so no worries . She's had other surgeries and this will be a breeze compared to those.
Make sure they take 6-8 samples from various intestinal locations. I've heard many stories about doc who only take 2 or 3 samples, or even worse, doctors who skip the biopsies because they can't "see" any damage.
The tests are fairly accurate with a sensitivity of 70-100% (the amount of celiacs each test catches), and the specificty is about the same. It is important to have a few tests run (or all) to give the disease a better chance of being caught. The tests to get are:
tTG IgA and tTG IgG
DGP IgA and DGP IgG
total serum IgA
AGA IgA and AGA IgG (older tests)
endoscopic biopsy (catches about 4 in 5 celiacs)
Keep eating gluten or the tests will not be accurate.
The last stats I saw about Hashi's and celiac disease (that I hope I am remembering correctly) said that 10-15% of celiacs have Hashi's (my guess is higher) and that about 6% of Hashi's patients have celiac disease. If you have Hashi's you are more likely to get celiac disease than the average person.
I too have thyroiditis (my doctor won't call it Hashi's beause my TPO Ab is not high but my thyroid have nodules and barely works... go figure LOL) and celiac disease. I find the symptoms are very similar but overall I feel better gluten-free. It's good you are getting tested.
With three positive celiac disease tests, you really do not need a biopsy. Some doctors get stuck on that because they think you might be the 5% of people with a weakly positive tTG IgA (tissue transglutaminase) whose test result is caused by something else. Your result is... about 65 times above the normal range - it doesn't get much higher than that! I have no doubt that your positive tTG is caused by celiac disease. A result that high shows that your body is attacking your intestinal lining.
The AGA IgA (antigliadin antibodies) is a test for gluten sensitivity. It's quite high. Gluten sensitivity with an attacked intestine means celiac disease.
The Endomysial Ab (EMA IgA) is about 99+% specific to celiac disease. There is less than a 1% chance that a positive EMA IgA is caused by something other than celiac disease. When the EMA is positive it basically means that it is trying to wipe out the top layer of your intestines because of the damage initially caused by the tTG IgA.
If you had the biopsy done, it would probably show damage. That being said, the biopsy can miss up to 1 in 5 celiacs, confusing the diagnosis process for some. If you feel comfortable going gluten-free with those (very definitive) tests, then you do not need the biopsy. Some like to have it for that extra push to go gluten-free, and others like to have it in case they need to refer back to it later, but it won't help you get better in anymore. Go gluten-free if you are happy with your tests.... Well, not happy! LOL Satisfied maybe?
If the biopsy is soon, you could still do it while gluten-free. With tests like yours, I wouldn't be surprised if there is still damage to see a few weeks or even months down the gluten-free road - but that's just a guess.
BTW, I had a positive tTG IgA and EMA and skipped my biopsy. Those tests were enough for me, so I'm probably a bit biased against doing the biopsy. I think they are more useful when tests are negative but celiac disease is still suspected, and not when one already knows the patient has celiac disease.... My rant. Sorry.
Welcome again to the boards. I hope you continue to feel better quickly!