I just hope doctors use delayed growth as a tool to halp diagnose celiac disease and not as a criterion
"In the children with celiac disease, 57 percent of the girls and 48 percent of the boys had abnormal growth two years before their diagnosis, they found. But the children weren't diagnosed until about age 6 for girls and about age 7 for boys, the researchers said."
As long as they can keep in mind that it is roughly half of celiac children who experience slowed growth - it's not everyone. I was off the growth chart as a child - very tall. Sometimes I wonder if that is one of the reasons the doctor never considered a celiac disease diagnosis for me when I first saw the doctors about my symptoms in elementary school.
Poops can can a long time to change. In my case, I had C for my entire life but I thought it was normal. Everything was well formed but in hindsight, it was packed way too tightly. Take a look at the Bristol Stool Form Scale to check and see if your BM's were actually normal. https://www.gutsense...mal_stools.html
As I said, I thought I was normal, and managed to go evry day or so, but looking at the chart, I was usually a 2 who switched to 1 or 3 on occassion. When I was gluten-free for about 9 months, my BM's changed to a 4 or 5, with a 6 once in a while... I honestly thought I had D. And going a couple of times a day was just odd. My toilet paper bill quadrupled. LOL
I babbled. My point is that you should make sure that your BMs are actually abnormal. Maybe it is just a new normal that you aren't used to.
You could always try testing now even though you are gluten-free. The tTG IgA and tTG IgG are the slowest tests to get back to normal; in some it can remain elevated for weeks, months, or even a year or so after going gluten-free. The EMA IgA, DGP IgA and DGP IgG tend to reflect a gluten-free diet faster.
It sounds like you already have a diagnosis of celiac disease, so you don't need to put yourself through a 2-3 month gluten challenge (and sickness) to re-confirm your diagnosis. Maybe try the tissue transglutaminase (tTG) tests now, and see it it shows anything. It may be normal, indicating that you are starting to heal, or it may still be elevated which means your recovery will take more time... As Kareng said, 6 weeks isn't very long, and some celiacs (like me) tend to feel worse before they get better. Hang in there.
Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.
Unfortunately negative HLA (DQ2 and DQ8) tests will not rule out celiac disease, but it would make it unlikely that you could contract it. About 97% of all celiacs have one of the two HLA types, the remaining 3% of celiacs do not. It is possible to have celiac disease wih a negative HLA test, it is just very unusual.... We do have a couple of board members in that situation though.
Genetic tests aren't really useful, in my opinion. All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease. Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.
I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.
That doctor sounds like a dolt. One month? Hah! We wish. My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.
I would consider going dairy free again. Half of all celiacs can't handle dairy when they are diagnosed. Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.
Corn and soy are problem foods for some celiacs. Keeping a food and symptom journal may help you pinpoint a problem. Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.
Thyroid check is a good idea too. It can slow and mess with digestion too. Having that treated, if needed, can really help. TSH, freeT4, freeT3, and TPO Ab are the best tests. Avoid T4, T3, total T4, and total T3 as they won't tell you as much.
You might want to get tested before going gluten-free any longer. Celiac tests will become negative after a time on the gluten-free diet, including for all celiacs. If you choose to test in future, after being gluten-free for some time, you will need to resume eating gluten for two to three months, and not all celiacs are willing to feel badly, for so long, just to get a diagnosis. Get tested if you can.
As for that left side pain, your large intestine runs down the left just before it... exits the body. Constipation or a change in bowel habits could be causing that discomfort, and that could result from a change in diet. If you are staying gluten-free, you'll need to give your body more time to adjust. It can take a celiac months or years before they truly start feeling better.
Has he had the DGP IgA, DGP IgG< or EMA IgA tests done recently? They might be worth checking to see if gluten is the problem.
The EMA IgA is usually positive only if the tTG iGA is quite active - only positive when the disease is in it's advanced stages. If he is gluten-free, the EMA IgA will come down before the tTG IGA does.
The DGP also reacts more quickly than the tTG tests. In fact, the DGP tests are often used to test for dietary compliance. If the DGP tests are positive, it means gluten is getting into his diet somewhere.
I agree, first degree relatives should be tested every two years (for life) or as soon as symptoms are presented. Babies and toddlers often don't test as reliably accurate as adults so make sure all the tests are run, especially the deaminated gliadin peptides (DGP IgA and DGP IgG).
If symptoms are present, but the kids test negative, it is possible that they have sero-negative celiac disease and should go gluten-free... Just something to consider.
I too had to doctor shop to find someone who would prescribe NDT to me. My GP told me his "scientic mind" would not allow him to prescribe NDT. LOL I can laugh now but at the time I was so frustrated with him that I was in tears.
I agree that your meals are high in starches (which gets changed to sugar in the body) and that will cause your blood sugar to go up and down dramatically. It sounds like hypoglycemia to me too, perhaps being affected by low blood pressure too. Perhaps switch to whole or 2% milk, get yogurt at 9% fat instead of 1-2%, and try adding more meats or nuts so you have more fats and proteins at every meal. That should help your blood sugar stay more stable.... But I'm not a doctor, and am just guessing.
Perhaps try tracking your macros (protein, fat and carbs) along with calories. A site like fitness pal can help with that.
A low positive tTG IgA (not double or quadruple the normal upper limits like yours was) can be caused by thyroiditis, diabetes, liver disease, crohn's, colitis, or a serious infection. Those causes only happen in about 5% of all positive results. A false positive tTG IgA is not common; a positive result is caused by celiac disease 95% of the time.
The EMA IgA only gives a positive result for celiac disease. I have never, in three years of researching celiac disease and being on this board, seen a false positive EMA IgA test. They are specific to celiac disease 98-100% of the time. Also, the EMA IgA tends to detect more advanced disease. After the tTG IgA has started to create problems, the EMA IgA appears and attempts to wipe out the upper layer of the intestines with the intention of killing off whatever is causing the problem.
A positive EMA IgA in addition to a positive tTG IgA is celiac disease - that is how I was diagnosed.
The endoscopic biopsy has a sensitivity that can be as low as 80%. That means it can miss up to 20% of celiacs, or 1 in 5. I agree with the others that you are a celiac and the biopsy missed the damage, and because your small intestine has the surface area of a tennis court, I'm surprised it doesn't happen more often.
Also, those tests will not indicate non-celiac gluten sensitivity (NCGS). The tTG and EMA tests are NEVER both positive in someone with NCGS. Ever. It is barely possible that someone with NCGS has diabetes, thyroiditis, or some other problem that would cause a slightly elevated tTG IgA, but if it is accompanied by celiac disease symptoms then it's celiac disease. As somone around here once said, if it looks like a duck and quacks like a duck....
Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done. Those celiacs who are gluten-free will eventually produce false negative test results.
Ask for as many tests as you can get:
ttG IgA and tTG IgG - tissue transglutaminase is the most common test
DGP IgA and DGP IgG - deaminated gliadin peptides are newer tests that are often better at detecting celiac disease in young children or in early cases.
EMA IgA endomysial antibodies tend to become positive as the disease progresses
total serum IgA - a control tests to make sure one is not too low in IA to produce accurate celiac disease test results - 5% of celiacs are IgA deficient
AGA IgA and AGA IgG - older less reliable anti-gliadin tests that were replaced by the DGP tests
endoscopic biopsy - 6+ samples taken
If the tests all come back negative, you could always consider going gluten-free to see if she has non-celiac gluten sensitivity (NCGS). Those with NCGS have the same symptoms as those with celiac disease. Give the diet a good 6 months if you can before judging the effectiveness. Don't go gluten-free until testing is done though.