Is your doctor willing to diagnose him with celiac based on the positive tTG test? If so, the scope isn't really needed for a diagnosis. The tTG IgA test is specific to celiac disease about 95% of the time. That means that maybe 1 in 20 positive results are caused by something other than celiac disease (usually diabetes, crohn's, colitis, thyroiditis, liver disease, or a serious infection) but those false negative are always weak positives - not double the upper normal limit. I agree that you could call it celiac disease with 99% certainty, and that's pretty certain when it comes to medicine.
If the doctor is not willing to give a diagnosis of celiac disease without the biopsy, you may want to consider it. Some schools and care givers may require a diagnosis before they will accommodate his special diet. You'll need to think about the future, when he is not always in your care, and others are having to provide meals for him.
If the doctor wants further proof, you could retest after he has been gluten-free for at least 6 months. If he is improved, and his autoantibody levels come down, that is further proof that it is celiac disease. Just be patient while waiting for improvements. At 6 months gluten-free most of us are not recovered, we are just well on the way to recovery. KWIM?
I agree. Get the test done some time in the future if you wish but it isn't needed - you already have a diagnosis of NCGS. Don't discount the seriousness of NCGS though. Those with NCGS can have the same symptoms as a celiac, just without the dh skin rash or villious atrophy. They can have ataxia, arthritis, GI problems, neuropathies, migraines, fatigue and a boatload of inflammation which can lead to other health issues. If you have NCGS, you do need to be gluten-free too.
Did you have all of the blood tests done? It is not unusual to get a false negative celiac test, for the older anti-gliadin antibodies tests, false negative results can occur for over half of all celiacs.
These are the tests:
tTG IgA and tTG IgG
DGP IgA and DGP IgG 9deaminated gliadin peptides)
total serum IgA
AGA IgA and AGA IgG (antigliadin antibodies)
You need to be eating gluten in the 2-3 months prior to testing for the tests to be as accurate as possible.
If they only ran one celiac disease test, he could be a celiac who is still in the earlier stages of the disease. The DGP tests (deaminated gliadin peptides) are the best tests for kids, and both IgA and IgG based celiac disease tests should be run in all of the types of test (like ttG IgG and tTG IgA). As you know, he must be eating gluten in the 2-3 months prior to testing.
He is so very new to the diet that I would not judge its effectiveness yet. The first 3 months or so can be very up and down in a celiac's recovery. Some symptoms tend to improve within days, like stomach aches and bloating, but others can take a good 6 months to a year. The symptoms that tend to take longer to resolve are often neurological like neuropathies, ataxia, cognitive issues and sometimes anxiety; vitamin deficiencies and arthritis can take months to a years to improves as well. He'll need to stay gluten-free until close to Xmas before you can truly judge if eating gluten-free is helping him.
Keep the food and symptoms log going. They often do help. Just remember that symptoms from a food sensitivity usually appear from 1 hour to 72 hours later, some people even have a delay of over 3 days. Because of that, it may be helpful to not vary his diet every day (ex. eat an apple and muffin at lunch every day for a week and then try a new fruit the next week) , or try to eat the same foods on the same days every week. Remember too that food sensitivities, like celiac disease, do not always improve as soon as the food is removed. Casein (milk protein) can take a few weeks to recover from if sensitive to that protein.
When he rages, and it is safe, you could maybe consider videoing it for his doctors to see. Seeing is believeing, and so many doctors won't take a patient's word for what has happened.
Best wishes to you. I hope it improves for him soon.
I'm not sure what abbreviation this is... it was the Gliadin Iga Abs2. It was a 329 with a moderate/strong positive being >30. My IgA was 144 with the standard range of 91-414 and the Transglutaminase Iga was <2 with negative being 0-3. I think that last one is the tissue one?
Your IgA of 144 was the control test. You want that in range so your other tests will be accurate - looks good.
Transglutaminase IgA is the tTG IgA. Yours is negative but it has a sensitivity that can be as low as 75%, which means that it can miss up to 25% of all celiacs.
The Gliadin IgA Abs2 was most likely the AGA IgA (anti gliadin antibodies) which is the older test that tends to miss celiacs... looks like it caught you though! Ten times above the normal limit is quite positive!
I don't know of anything that can cause positive results in this test, besides celiac disease, except that SOME doctors believe the AGA tests can catch some cases of NCGS (non-celiac gluten sensitivity). A strong positive is usually a sign that it caught the disease it was made to catch: celiac disease. If you do some research you may find others, but it looks like celiac disease to me.
Cheating will set you back a few weeks to a month. If you cheat repeatedly, it will set you back further because autoantibody levels will start to rise. The tissue transglutaminase antibodies (tTG IgA and tTG IgG) can be very slow to change. I was gluten-free for about a year (with two known accidents in the early months) before my tTG IgA levels came down to normal. That means that even though I was gluten-free for 363 meals in a year, my intestines were still being attacked and damaged... One year later!
Avoid cheating at all costs. Eat raw fruits and veggies if you need to. When we travel, we rent cottages, camp, or bring along camp stoves so we can prepare our food. It's a pain not eating out while on vacation, but long term health is important.
Here are 300 possible symptoms of celiac disease :http://www.curecelia...SymptomList.pdf As you can see, many of them are not very obvious. It's no wonder that celiac disease is underdiagnosed.
The gluten challenge is usually the same for adults and children: 8-12 weeks for the blood tests and 2-4 weeks for the biopsy. The recommended amount of gluten per day is 1/2 to 4 slices of bread per day with 1-2 slices of bread (or equivalent). Withe such a small one, I'm sure the smaller amounts would be enough.
The genetic tests (DQ2 and DQ8) are positive in 97% of all celiacs, which means that if the genetic tests are negative it just means that celiac disease is unlikely - it can't completely rule out the possibility.
Children have a higher rate of false negative celiac tests. If you end up with negative results and still suspect celiac disease, consider having your little one go gluten-free for 6 or so months anyways. It could be celiac disease, or it could be non-celiac gluten sensitivity (NCGS) for which there are no blood tests.
I find (and this is just my experiences) that when my autoimmune system flares up, whether it is from a glutening or some other AI problem, it often feels like an illness. Often I'll describe the feeling as "flu-ish" or like I'm coming down with something but never get the full brunt of the illness.
The difference for me is often how sick I get. When it is AI caused, the sick symptoms I get are fatigue, mildly upset stomach (I don't get upset stomachs often), chills, achy, headache, and sometimes a sore throat and possibly slightly swollen glands. When I am truly sick with a virus or bacteria, I still get those same AI symptoms, although they get more extreme, but I also get other symptoms. A flu of cold will give me stuffed up sinuses, a headache right behind the eyes (different from the AI related migraines), a fever, and it tends to bottom out my blood pressure.
Really, the main difference is AI symptoms don't seem to evolve into all of my sick symptoms. It comes back to that feeling of "coming down with something" but I don't actually get worse. It almost feels like I fought it off, but if that was the case I would probably have a runny nose or mild fever to show for the battle.... plus I know that I don't get sick with the flu every few months. LOL
I would guess it is AI (celiac) related if it lasts more than 48 hours (like food poisoning or a mild bug would) and especially if he does not get a snotty nose in a couple of days, or feverish.
As far as I know (and I could be wrong), Hashimoto's id not a cause for an elevated deaminated gliadin peptides (DGP) test. Hashi's can cause slightly elevated tTG IgA results, but the DGP tests is more about a reaction to gliadin (gluten). I don't think Hashi's wil cause a false positive.
My guess is that you have celiac disease and have not been as careful as a celiac needs to be, which is more strict than someone who is gluten-free for other health reasons often is. The DGP tests are often used to monitor dietary compliance because they tend to change fairly rapidly in response to dietary (gluten-free) change compared to the tTG tests which can take many months to years to normalize. My guess is that you are somehow being exposed to tiny amounts of gluten.
Are you eating in shared kitchens? The crumbs in toasters, butter, peanut butter and jam are more than enough to make a celiac ill. So is the gluten in soy sauce, worchestershire sauce, and some soups and spreads or mustards. The gluten stuck in the scratched teflon coating of frying pans, or the scratches of the plastic surfaces of a colander, spatula or cutting board could also make a celiac sick. Could that be it?
Best wishes to you. I know dealing with Hashi's and celiac disease can be a hassle.
Oops, I forgot to add that I also chose to skip the endoscopy because they can miss celiacs (up to 20% of celiacs) and I didn't want a false negative biopsy to muddy up my determination to eat gluten-free. I didn't want to risk the false negative result.
I had some labs done, and after being gluten-free for 3 years, some things are changing.
My tTG IgA is very normal! Yeah! It was still abnormal at about a year gluten-free, so I was wondering it it was down yet. It was a 4 with a normal range of 0-14.9 (used to be 0-20). I have this disease firmly under control! Woohoo!
Vitamin A, which was always borderline low to low with vitamins and injections is.... stlll borderline low at 1.5 (1.5-3.5). Absolutely no change and I have stopped worrying about it. Nothing changes that one.
My cholesterol went up! It used to be borderline low and my triglycerides were below normal. Now, my triglycerides are a low normal and the cholesterol is more average. I figured that one would go up. Now I KNOW it had nothing to do with how well l ate. LOL
My blood glucose is normal, though still higher than I would have liked it. Darn sugar...
All my hormones are normal, CBC stuff is all normal. All good.
The only abnormal is my TSH which is at 0.01 with a range of 0.20-4.00. I take natural desiccated thyroid so my thyroid is suppressed. Free T3 was 4.8 (3.5-6.5) and Free T4 was 12.8 (10.0-25.00). Those two aren't as great for me. I was feeling a tad bit off towards the hypo end of things lately, but I don't feel it is enough to increase my meds. If I lose a few, my meds will probably be better matched up to me again. LOL Good enough for now.
I don't know... you could always try the DGP tests, if you can get them. The DGP tests are similar to the AGA tests but they are more sensitive; the DGP less likely to have a false negative result than the AGA but those AGA tests do still catch many celiacs.
If you do get additional blood tests, you might want to request that the genetic tests (DQ2 and DQ8) be done as well. Almost all celiacs have at least one of those genes, which 30% of the world carries. It is quite unlikely that you would have celiac disease if you have negative blood tests and your genetic tests are negative. If the genetic tests are positive and your blood tests are negative, that also means you most likely do not have celiac disease, but there is a chance of a false negative result. Some celiacs are seronegative and are diagnosed only with the endoscopy biopsy, but the vast majority have at least one positive blood test.
If you don't mind getting poked with the needle again, and this is not costing you money, then you may as well get tested, otherwise I would advise you to try the gluten-free diet for 6 months to see if you get better (if you have NCGS). Right now it looks like you most likely do not have celiac disease, although there is a small chance that the DGP tests could show up positive for celiac disease. The AGA tests are not very sensitive for NCGS, so a negative AGA does not mean you do not have NCGS - only a good response to the gluten-free diet is diagnostic of NCGS.
All I can find is that unlike breast milk, they have never found gliadin in cow milk, so it has been labelled gluten-free. I suppose that there could be parts of the gliadin in the milk (like in a gluten removed beer such as Daura) or it could be another "gluten" protein that hasn't been identified. It appears cow milk is thought to be gluten-free at this time.
I find it unlikely that barely would get into the milking equipment. It's usually stored closed, or at least it was at my uncle's farm. I think allowing dust and grit to get in would eventually cause problems for the cows too.
I think the 7-9 ppm flour is probably the culprit, but human's don't need cow milk (just cows do ) so removing dairy (just to be safe) is no big deal. You could always try organic (pasture fed) dairy at a later date - those cows aren't fed barley.
I'm afraid that I agree with Stephanie, it is his house. If you were actually living there, then yes, it would be nice if he would go gluten-free, but many celiacs live (safely) in homes that are not gluten-free. It would be nice if he was gluten free, but you are now only a visitor and I think it is too much to expect him to go gluten-free for a frequent visitor - even if it is his daughter.
It sounds like the butter is the main issue. Perhaps you could buy some butter for them, to be used only for your dishes. Put it in a tupperware container and hide it in the back of the fridge, or even freezer, where he won't touch it. I'm sure that your mom could make sure pans and pots are clean before using them, and if you question the cleanliness of the utensils (my utensil drawer collects crumbs) just wask them off before using them, and have your mom wash them before using them to prepare your food.
If all that doesn't work, you'll have to have them over to eat at your home instead, or bring your own food when you visit. Better yet, bring gluten-free food to share.