I recently went to see a new LLMD. He was reviewing my dumptruck-load of past test results when he stumbled upon a Gliadin IGG/IGA test. He was very surprised by the numbers:
Gliadin IGG 51.4 [negative = less than 45] Gliadin IGA 153.4 [negative = less than 45]
At the time, the doctor who ran the test (not a LLMD), commented on the positive nature of the results, but didn't seem concerned. My current LLMD also knew of the results, but paid no mind to them. As a result, I was really surprised by the new guy's response.
My current LLMD has been saying for months that I seem to have an "absorption issue" as I just don't seem to be improving on orals. He didn't really have anything to add beyond that. Nor did he think to test me for gluten sensitivities or anything.
Could this be the root of my absorption issue? Anyone have any experience with going gluten-free helping them get over the hump?
I'm also curious about the results with a lack of symptoms. My cousin has celiac's and can't even look at foods with gluten in them without getting sick. I've never had any issues.
Thanks! /CT
Posted by alliebridge (Member # 9103) on :
Malabsorption and leaky gut issues can be from food allergies (from eating foods your body reacts to), I believe.
I developed a severe wheat allergy from Lyme. My tests results were off the charts for a wheat allergy but negative for celiac. So you can have one without the other, strangely.
My advice is to try an elimation diet. Take wheat and gluten products out for a while.
No symptoms doesn't mean you don't have it. For me, when I ate wheat every day (in the bad old days!) I had no bad effects at all from eating it.
It was only when I went off from it for months and then reintroduced it back that I had unbelievable symptoms (felt like I was dying!).
Posted by sixgoofykids (Member # 11141) on :
Definitely YES!!! This IS your absorption problem!!
I'd recommend celiac.com for information on the diet. They have a message board.
In the meantime - meats, veggies, fruit, rice are all gluten free naturally as long as they are not processed. You will not want to run out and buy a bunch of processed gluten-free foods right now, you want to eat really healthy until that gut is healed.
This could also be causing a LOT of your symptoms. Celiac is a serious disease on its own.
Posted by Chronic Triathlete (Member # 15245) on :
Great... another mysterious disease to research
I've been about 75% gluten-free for awhile now so I know what's generally good and bad to eat, but could never do that last 25%.
Bread and cereal are obvious and easy, but looking through the ingredients of everything for gluten is such a hassle. Ketchup?! Chicken soup?! They use it as a thickener and coloring agent. It's everywhere.
Looks like I'll have to make it happen.
Thanks for your responses. /CT
Posted by jmb (Member # 18338) on :
Chronic, hello. I have cleaned up the diet to the max over the last month and have been shocked with the difference. I feel much better. (I stopped the Benicar too just becasue I felt like it.)
That said I had the impression that you had cleaned up the diet rather well already. I hOpe you are feeling better but if you felt better I doubt you would be chillin' on LymeNet.
Keep the rubber side down (you too, Jens!)
Posted by seekhelp (Member # 15067) on :
Yes, tell me about gluten being in EVERYTHING. I had this test (IgG) and normal was 0-20. Mine was 99+. Did going gluten-free help my symptoms....nope barely at all. It's hard to say, but worth a try IMO.
i think these tests are very unreliable, except for upper GI endoscopy w/biopsy to actually show damaged villa in intestines. Too many holistic docs blame the 'gluten connection' for all stuff. I ran into many.
Posted by Chronic Triathlete (Member # 15245) on :
JMB, Don't talk about Jens. It makes me cry
Like I said above, I've been good, but not great with the gluten thing. I've been on the low carb kick... which the new LLMD said is less of an issue when compared to gluten, in my case.
Glad you're feeling better.
/CT
Posted by Leelee (Member # 19112) on :
After finding out via a stool and saliva test that I am gliadin positive I have completely, 100% eliminated gluten from my diet.
The results are amazing. The first thing to clear up was my stomach/bowel issues. My joints all feel less gunked up and freer.
I went completely gluten free to the point of reading all labels and really going out of my way to avoid possible contact with gluten.
BTW, I did the same with soy and milk as I found out I sensitive to those as well.
Posted by Lymetoo (Member # 743) on :
I am gluten intolerant too. It is important to be completely gluten free if you have celiac.
There are many hidden dangers and concerns that are long term if you continue to eat gluten when you shouldn't.
It takes sometimes several months to notice improvement, but I could tell in about 10 days!
Research it and see if you have symptoms you're attributing to Lyme.
My body pain issues got way better once I stayed off gluten.
Posted by hope4sofia (Member # 20577) on :
I tested positive for Potential Celiac a while back with the IGG. I tried going gluten free for about 3 weeks. Didn't notice any real improvement. Though I have had absorption issues it seems.
Then I had a colonoscopy in which they took a biopsy. That result was negative. After that, I assumed I don't have Celiac. Not sure why the high IGG though.
I would definitely recommend going entirely guten-free for a while to see what happens. Some people feel tons better.
Posted by sixgoofykids (Member # 11141) on :
IgG is not a good indicator for Celiac, though it should be kept in mind. So if you've gone gluten free and IgG was the only indicator, you may or may not have Celiac.
IgA is a good indicator that gluten is truly bothering you. IgG just supplies additional information.
Ttg would have been nice ... that shows whether you're having an autoimmune reaction.
There are ketchups, chicken soups, etc. that are gluten-free. It's just a matter of figuring out which ones. I ate 100% gluten-free for two years (not celiac, just gluten intolerant thanks to Lyme, my IgG and IgA were negative) .... it's hard to get started, but it's second nature once you do. In fact, at home, I make gluten-free meals a lot, but not intentionally, just habit.
Tinkiyada is good for gluten-free pasta. Whole Foods is excellent for gluten-free items, even breads, etc. I think you can ask for a list of gluten-free items in the store.
Outback Steakhouse, PF Changs, Cheeseburger in Paradise, Maggiano's, and many other restaurants have gluten free menus (Maggiano's sends the chef to your table).
Please go to Celiac.com for more suggestions, the people there are well educated.
Posted by disturbedme (Member # 12346) on :
I just found out I am gluten intolerant as well. I have no idea if I have celiac or just gluten intolerant... the test I had done was the saliva test.
I'd like to have a test done to know if mine is autoimmune or not. I think that would help me a lot to know that much.
Posted by CD57 (Member # 11749) on :
I'm trying to do this too. IT IS HARD!
Posted by Lymeorsomething (Member # 16359) on :
Hey Chronic, I've been seeing the same LLMD as you and he also suggested possible absorption issues for me as orals have not done too much. Maybe that's his regular spiel
I wouldn't bank on celiac being the root of your problems. My gliadin numbers were well under 5 and I'm in the same boat as you.
I expect to move to IV shortly...perhaps you should consider the same...
Also if you get a moment...can you PM me the name of your new LLMD...thanks...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by hope4sofia: I tested positive for Potential Celiac a while back with the IGG. I tried going gluten free for about 3 weeks. Didn't notice any real improvement. Though I have had absorption issues it seems.
Then I had a colonoscopy in which they took a biopsy. That result was negative. After that, I assumed I don't have Celiac. Not sure why the high IGG though.
I would definitely recommend going entirely guten-free for a while to see what happens. Some people feel tons better.
A colonoscopy biopsy would say NOTHING about whether or not you have celiac disease!!!
Three weeks is not long enough to tell .. for most people... esp if you didn't eliminate ALL sources of gluten.
PS.. to Chronic... There is now a gluten free Rice Chex!!
Posted by sixgoofykids (Member # 11141) on :
Tutu is correct, the biopsy would have to be done of the small intestine going through your mouth to get it.
Posted by Shosty (Member # 12232) on :
You have a very positive Gliadin IGA. I would go on the premise that you do have celiac.
Since you are already off gluten 80%, a biopsy might not be accurate. You would have to go back on a lot of gluten, for, as I remember, 6 months.
People with celiac disease are different from people with gluten allergy/intolerance/sensitivity in that the tiniest amount can cause problems. YOu need to go on the celiac site, and start reading labels in an informed way: avoid maltodextrin, barley malt, some pregelatinized starch (call companies and see if this is from corn), some natural flavors etc. etc.
Watch out for meds! Many, including antibiotics, contain gluten. We get our meds compounded.
You can have celiac (with absorption problems) with little to no symptoms.
Leaky gut from allergies is an entirely different thing, but it is conceivable, if you have been on antibiotics, that you could also have some of that going on.
I would go on an elimination diet and avoid gluten, dairy, soy, citrus, nuts, eggs, tomatoes, and any other suspected allergens, then reintroduce foods (not gluten of course) one at a time, and see which ones you react to.
If you have celiac, and it seems you do, it can be dangerous for you to have the minutest amounts of gluten. Food intolerances (as opposed to anaphylaxis) can make you feel sick, but are not life-threatening.
You need to take this seriously, you really do.
Going gluten free is not that bad. You can even bake bread and muffins, and the pasta is good.
I do not have celiac but have multiple allergies that developed 2 years ago, in my 50's. I cannot eat any gluten, dairy, soy, nuts, most pitted fruits, seed, eggs, avocado, salmon, most oils...the list goes on and changes a lot too. It's a drag, but it's better than being so sick. In your case, it's a drag, but it's better than dying younger than you should.
Posted by alliebridge (Member # 9103) on :
It's true that you need to be eating gluten/wheat to get an accurate test.
I think that's why my test results were off the charts for a wheat allergy. I hadn't it in a long time and ate it the night before the test to make sure it would show up.
Be careful of the gluten free products. A lot of them use potato flour and white rice flour which are too starchy for Lyme patients.
I recommend baking with coconut flour or nut flours like almond flour, if you can tolerate them.
Posted by n.northernlights (Member # 17934) on :
Some people say that all lyme patients should go gluten-free. The antigliadin test had been around for a long time, the endomysium antibody test was first but missed a lot fo celiacs, then the antigliadin test came, it still misses a lot of celiacs, and the tissue transglutaminase test is newer and is more accurate.
Still, the ttg test will miss maybe 50% of patchy celiac. (all those tests are clibrated to onsly be positive when the villi are seriously damaged, they are not calibrated to catch early celiac.
The lyme-gluten issue might not be proper celiac, just a type of immune reaction that may or may not go away after successful lyme treatment. (not popular to say this on celiac forums)
Lyme MD also mentions that some lyme patients have slightly positive celiac tests but negative biospy, and do react to gluten just like a celiac.
It took me seven months off gluten to get rid of the awful fatigue.
The antigliadin tests here in the beginning of this thread are quite positive.
Posted by hope4sofia (Member # 20577) on :
Correction, I had a endoscopy and colonoscopy and one of the things they tested for was Celiac.
I do wonder, sometimes, if it's still an issue. I don't know. So many Drs, so many tests, don't know what to think or believe anymore.
Posted by Chronic Triathlete (Member # 15245) on :
I just wanted to add to this...
I've been eating about 95% GF for the past 10 days. I'm still going through the non-GF condiments and other wheat-hiding items in the kitchen, but I've eliminated all of the obvious stuff.
Like I said before, I never noticed any of the "traditional" gluten sensitivity symptoms. However, in the last 4 or 5 days I've noticed a dramatic reduction in my appetite. I get hungrier a lot less and have to remind myself to eat.
Also, my crazy cravings are all most gone. There were times when I'd come into the kitchen and just randomly attack at. I'd eat a couple of carrots and then some chips and then some nuts or whatever I felt I needed. None of it was satiating. I was just eating to eat.
I asked about this in an online GF community, and the veterans there said that this is common. As you go GF you gut repairs itself and you start to absorb nutrients better. Make sense, but I didn't expect it to be so dramatic.
I'm hoping this translates to better abx absorption too. I've been feeling rather low this week. Maybe I'm getting more meds into the system now too.
Posted by Shosty (Member # 12232) on :
I also noticed changed in appetite. The first few days I almost shook with desire to eat bread, but after that, I had no craving at all for anything w/gluten.
Congratulations on a great start!
Maltodextrin seems to be the most frequent ingredient to watch for, barley malt too.
Real healing can take months. Hope that you continue to find surprising aspects of this healing, as time goes on.
Good luck!
Posted by kim812 (Member # 17644) on :
I had negative celiac blood test but a high 45.8 stool celiac test.
I went to my GI doctor who said the blood test is very accurate and the stool test is not. In fact he said the medial community does not reconize the stool test as being a valid test at all. The saliva one too.
I insisted on an endoscopy to make sure. He took about 4-5 tissue samples and they came back negative.
If you feel better going gluten free then I would stick with it. I was on it earlier this year and didn't notice anything. Otherwise I would have stuck with it.
If you have a positive stool sample I would definately get the blood test done too.
Posted by Pinelady (Member # 18524) on :
They found my niece had celiac and Chrones last year, through biopsy and genetic testing.
So I wonder how accurate the levels are? But if the gluten free helps that is the way
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