I agree with cyclinglady, it usually takes a few days to a few weeks to feel better. Two weeks seems the average for starting to feel well again but quite a few are still fatigued and "off" a month later.
I also agree that he should have his own packed food at the base. They've proven that they can mess it up. It is better to be safe than sorry, so if it is feasible I would pack him food to eat out of school in re-heatable containers. If having different food is an issue for him you can always get their menu and try to co-ordinate with what they are serving.
I would look into her medical records. If she had a positive blood test (tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA) then she has celiac disease. If her total serum IgA was low, then her tTG IgA, DGP IgA, and EMA IgA tests will show a false negative and can not be used to diagnose her. Does she have a positive endoscopic biopsy (at least 6 samples taken)? She needs to be eating gluten in the 2-3 months prior to testing or the tests could be falsely negative.
Genetic testing will just say if she is part of the population which COULD get celiac disease, not if she has celiac disease.
Oops, Kareng just posted... ditto everything that she said.
You meet criteria 1,3,4, and 5. That's celiac disease, even if a doctor won't state that it definitely is (because he's covering his own... um, backside.
It really isn't that unusual to have negative tests, especially after going gluten-free. Those tests can easily miss people, and for some reason they just don't work on everyone. My guess is though, that if you continued to eat gluten, and made yourself really, really sick over months and years, that your tests would be positive eventually.... But you really don't want to, or need to, go there.
You've met the diagnostic criteria. It is time to settle into the gluten-free life, check your nutrients and bones, and get your family to get tested.
Oh yeah. That DGP IgG of yours is well over double the normal limit - that is something to take seriously. The DGP IgG is considered to be one of the most specific (to celiac disease) tests out there. A positive result means you have celiac disease 99-100% of the time. (This is where I got my stats: http://www.worldgast..._long_FINAL.pdf) It loos like celiac disease to me too!
Low vitamin levels, as well as low cholesterol and triglycerides are common symptoms of celiac disease. My cholesterol and triglycerides were far enough below normal that my doctor is trying (through diet) to raise it some. LOL
I agree with the others that you need to see a GI specialist and eventually go gluten-free. When you are finally able to go gluten-free (after testing is complete) make sure you give the diet a few months to help. The first year of recovery is full of ups and downs, and many symptoms may not improve for many months.
Thanks you two - I'm seeing my GP tomorrow I will ask about the celiac panel. I know I've had some celiac bloods done but I think it was just a subset of the list you cited NVSMOM. How reliable are the results though ?? I hear false-positives and false-negatives are not uncommon??
False positives are very rare. I think it gets as high as 5% for the tTG IgA test but it would be a weak (false) positive and is probably caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection... The positive is caused by something in all cases but 95% of the time it is caused by celiac disease.
False negatives are much more common. The biopsy can have a false positive rate as high as 20%, especially if fewer than 6 samples were taken. The blood tests can have a false negative rate as high as 25% based on the test's sensitivity - that's why it is a good idea to get as many tests done as possible.
This report (page 12) shows the sensitivities of most of the tests, as well as how specific the results are to celiac disease (% of positives caused by celiac disease): http://www.worldgast..._long_FINAL.pdf
Icelandgirl is right, two months is not very long to be gluten-free - even though we feel like it is. At two months gluten-free I felt worse than I did at 1 month gluten-free. A bunch of my symptoms came roaring back in and it took me a couple of months to get back to where I was. I had a few more (more minor) dips in the road but I was feeling quite a bit better, and consistently better, by 18 months gluten-free.
I know it is awful to hear (I didn't like hearing it) but you may just need more time.
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.
I think it may be more of a matter of not having the proper gut bacteria that can help with digestion.
Many people I have talked with about this said that it took them a while to adjust to a greater amount of raw fruits and veggies when their diets changed. Maybe it takes a while to get accustomed to the raw foods.
It could also be other food sensitivities that you are starting to notice. I did not realiz apples gave me a stomach ache until after I had been gluten-free for quite a while - it was hard to notice a food sensitivity when you usually had a stomach ache after you ate. LOL
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