Sometimes they call late onset diabetes of adulthood (LADA or latent autoimmune diabetes of adults) is referred to as type 1.5 because it sets in so slowly. LADA can take years to fully turn into type 1 whereas in kids it seems to happen faster, within days to weeks instead. Because LADA takes so long to set in, patients often have symptoms of type 2 and are misdiagnosed. In the end though, type 1.5 ends up like type 1's who can no longer make insulin due to autoimmune pancreatic damage.
It's confusing, isn't it? I've been reading like crazy lately too. Lol
I do not know much about the pancreas and fat absorption... I'll get that disclaimer out of the way now. But I think if you have a tough time digesting fats, then you would need to consume more fats to give your body what it needs, and it does need fat. I wouldn't cut fat unless it is causing health problems. Not absorbing fat would be like not absorbing a certain vitamin - a person would take more until the body is working better... I think.
Pancreatic enzymes might be a good thing to look into.... I hope someone else chimes in with some wisdom - I've got nothin' here.
I'm another who's ttG test took a long time to come down. It was just about normal after over a year gluten-free, and while on mild steroids. Some of us take longer.
Also, an elevated tTG can be caused by thyroiditis, diabetes, crohn's. colitis, chronic liver disease, and serious infections. I have thyroiditis and my blood glucose isn't what it should be so I'm guessing that that is what is keeping mine high as I KNOW I haven't been glutened. Just keep being careful and hopefully the doctor can offer some advice.
Somewhere in the " evidence" presented it says to get your fingers wet and you will leave yellow spots from the iodine coming out.
I think that was the site I that I found... I found the oozing a bit odd too. Lol But half of the articles I read I take with a grain of salt as so many of them seem half correct. I know iodine can be helpful with low thyroid function, and low thyroid function is common among celiacs, so I find it a bit interesting to discuss ideas that "could" help. I don't know how well testing iodine on your skin works but it is difficult to take to much iodine so supplementing usually does not hurt.
I agree. You have had one positive (for sure) celiac test, and one test (biopsy) which could be celac, so I would go with celiac disease as a diagnosis and try the diet for a good six months.... Try for six months as many symptoms take months to improve, so if you quit too soon you might mss the benefits and think the diet did not help. A food and symptom journal will help you keep track if your improvements too.
If your symptoms improve on the gluten-free diet, I would say that it's not crucial to get diagnosed as long as you will stay on the diet. If you feel better gluten-free, then you have either celiac disease or Non-Celiac Gluten Intolerance (NCGI) and for both treatment is the gluten-free diet.
If you (JBarnett) decide to do testing, you have three options: the blood tests, the endoscopic biopsy, or a biopsy beside your dh rash. The first two will only work if you have done a 8 or 2+ week gluten challenge... and chances are you won't have dh if you are gluten-free either.
Keep in mind that celiac disease tests are NOT foolproof. There are many mnay people on this board who have one positive blood test and not another, or a positive endoscopic biopsy and negative blood tests, or positive skin biopsy and negative endoscopic biopsy, or positive blood tests and negative endoscopic biopsy, Not many celiacs are positive in all tests. From what I have seen, about half pass at least some of their tests, but that doesn't mean you don't have celiac disease... It's like being tested for diabetes, maybe fasting glucose is sky high but the A1c is totally normal - that doesn't give one license to eat cake and soda though just because one test is fine. KWIM? We fail those tests for a reason, and with celiac tests, it's usually due to celiac, although in rare cases there are other causes... But there is always a cause.
I agree. That DGP IgG is 3X theupper normal limit - that's not a weak positive. And then to have two positive tests? That's pretty much a sure thing. Your GI sounds uninformed.
Take a look at pages 10-12 of this report. http://www.worldgast..._long_FINAL.pdf As you can see from the chart, the DGP IgG test is 99-100% specific to celiac disease. That means that out of 100 positive tests, 99-100 of them are caused by celiac it doesn't get much more positive than that! The tTG IgA is also another great test.
My guess is that they missed the damage in your intestines. The surface area of the small intestine is that of a tennis court - that's a lot of area to cover.
Good luck with the gluten-free. I hope you have a speedy recovery and are able to expand your family in the future.
My doctor didn't give me any reason for why my vitamin d levels are so low, he just said they are obscenely low and you need to get them up with 3 months of once a week megadoses of vitamin d (a loading dose). After the 3 months, I'll get my vitamin d levels retested to see if I can move to a maintenance dose that's closer to the daily recommended dose and if they haven't gone up, it would signify an absorption issue.
He does seem to acknowledge that he isn't really sure what's going on, he dismissed the almost positive results and just said "I tested you and all of it came back negative so it's not sprue" and then gave me a referral for a gastroenterolgist if I wanted to go further with tests. Honestly, I know I feel a lot better without gluten, I just was looking for a positive test so I could definitively say "This is the problem and it's not all in my head". My results are good enough for me, they're borderline positive on 2 tests, one of them being artificially low because I am IgA deficient (which I've at least read appears to be more common in celiacs?) and I'm severely vitamin D deficient which is also associated with untreated celiac disease from what I've read. I'm really glad that others agree with my analysis and that it's not just me analyzing things until they show what I think they should show
Yes, IgA deficiency is found in 1/20 celiacs which is higher than the regular population. You're right on that.
With borderline tests, after being gluten free and not having an adequate gluten challenge, and with your low IgA levels (affecting some tests), I think it's celiac. You doctor is just too black and white in his thinking; there's a lot of grey to consider there. If you test results were just one point higher, it doesn't suddenly mean that your celiac disease was activated. It would have bee just marginally higher in antibody amounts to get a positive result.
One positive test is caused by celiac disease about 95% of the time. Three positive tests is a sure thing - she has celiac disease. This report has more info on the blood tests on pages 10-12, and info on the endoscopy from pages 7-10:
The endoscopy is helpful for a few reasons: 1. It gives the doctors a chance to look for other problems. 2. it provides a baseline to know where you are starting from in the rare case that her healing is slow or non-existent. 3. It makes it easier (for some) to follow a strict gluten-free diet. 4. Some doctors won't give a diagnosis without one, and it may be needed for future (school) accommodations.
That all being said, I skipped the endoscopy when I had two positive tests. I knew that damaged parts can be missed in biopsies which can make some people doubt the diagnosis and make it harder to stay gluten-free. My symptoms did improve on the gluten-free diet so I'm confident I did the right thing.
It is a personal choice. Do what works best for your family.
A gluten challenge before testing usually requires a good 2 month of eating gluten regularly (about 2 slices of bread per day). I can see how you'd like to skip that! An endoscopic biopsy requires a shorter gluten challenge of about 2 or so weeks, but the wait to see a GI specialist in my home town, Calgary, is about a year so I'm not sure if that's a good fit for you either.
Another option would be to check your rash for dh (dermatitis herpetiformis) which is also a way to diagnose celiac. A dermatologist would take a biopsy beside the rash, and that can show autoimmune antibodies that celiacs have. You'd need to be able to get in to see a dermatologist on pretty short notice though. Check out the dh board for more info.
If you have a gluten sensitivity, you have either celiac disease or non-celiac gluten intolerance (NCGI) which has all the same symptoms as a celiac minus the villi damage (which the blood tests show is being attempted) or the dh rash. You definitely have one problem... Tell people you have NCGI with possibility of celiac disease, if they don't respect that - that just says something about the type of person they are or their ignorance. It has nothing to do with you.
That's a shame people have commented like that. They really showed their ignorance. Even if you ARE passing on the bread to stay low on carbs so you stay slim - thats a GOOD thing! Eating low carb is generally a pretty healthy way to eat. Who wants to be fat anyways? Even if you eat a typical diet and aren't in the mood for bread, so what? It's really a rather dumb thing to have said. LOL
I like to counter with sweetness and guilt: " Oh, I know that my diet is a hassle but I so appreciate you helping me stay healthy.... I'll bring my own food because our diet is a pain and it's difficult to cook for if you don't do it already..." Stuff like that.
Or you could always sarcastically deadpan: "Yes, I am lying and just faking major health issues just so I can skip bread at this meal." LOL
I do want to mention though, be really careful eating out at people's houses. Most marinades, sauces and some spices will contain gluten. Even if they make you a gluten-free meal, you can't use their butter on your potatoes because it may be contaminated; and some of their cooking supplies (spatula, colanders, non-stick frying pans) may also have gluten stuck in them and potentially make you sick. Be careful.
I trust my body telling me that gluten is just not something it wants to deal with anymore. I feel better without it, my body responds better without it. But at this point, I feel as if I need to get a clinical diagnosis in order for my family and my fiances' family to believe me.
But I also know from reading here that blood panels can come back negative. I also hesitate to eat a TON of gluten (even briefly) just to get a 'positive', especially with my new job.
So at this point, I'm wondering: I want to go to my doctor and tell him my concerns. He's an amazing doctor, very open-minded and trusts that people know their bodies. But if I get a negative blood panel, what do I tell people? Is it morally okay to tell people you have gluten intolerance even without a professional diagnosis? Or should I just suck it up, gluten it up and try for that positive professional diagnosis?
I'm so glad I've found this place. The amount of information here is incredible. Thank you
In Calgary, the only celiac disease tests available (at least last year) are the tTG IgA (tissue transglutaminase) and the EMA IgA (endomysial) which they only run if you have had a positive tTG IgA. The tTG IgA is a pretty good test but it does miss a minority of celiacs, especially those who are IgA deficient - run a total serum Immunoglobulin A (IgA) to check for that.
This report discusses the tests on pages 10-12. The sensitivity of the tTG IgA is 75-95% (page 12) which means that it will miss 5-25% of all celiacs.
If you can get the other tests (DGP IgA and IgG, tTG IgG) try to do so... if you test that is.
And no, I don't think it's wrong to say you have celiac disease, but you might want to consider saying NCGI or possible celiac disease just to be honest. Both are very real health issues, and that way you don't have to worry about fudging the truth. If people ask why you haven't tested, juts honestly tell them that the testing available is not very reliable.
If you decide to test (blood tests) and get a negative, then you know it's probably NCGI with a chance of it being celiac disease. If you have other autoimmune disorders, or your family does, that does increase the odds that it's celiac disease. A family history of diabetes (type 1), crohn's rheumatoid arthritis, Raynaud's, etc will make it more likely that you are dealing with celiac disease.
An endocrinologist is a good place to start. I had to go to an alternative practitioner (orthomolecular MD) because endocrinologist do not see people for "plain old" hypothyroidism up here... well they do but it takes a year to get in.
Be careful with that normal range, it can include a lot of people with thyroid problems. TSH should be near a one regardless of the range. FreeT3 and Free T4 should be in the 50-75% portion of the lab's normal range. TPO Ab should be low too.
Just makes sure you look at the whole picture before dismissing thyroid problems. They can be hard to see. Take me for example, for years my TSH was between a 4 and a 7. My doctors called that normal. When my TSH finally went high enough for the doctors to admit to a problem, my free T3 and free T4 were still normal (albeit at the bottom of normal) as was my TPO Ab (top of range).... I am not on a full replacement dose of thyroid in order to feel better; my thyroid was not doing much even though it looked fine.
I hope the tests are right and everything is fine.