pupppy
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50 minutes ago, cyclinglady said:
The TTG can be elevated for many reasons. This is from an old celiac.com member who has celiac disease and is a doctor. She references the University of Chicago:
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edit: nevermind i will just wait and see what they say. The only other abnormal thing was that my "eos" was slightly *high, and the hct was borderline low (41.0%, range 41.0-50%)
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Interestingly, DQ4 is a very rare haplotype in most of the world (freq .03-2%) and is significantly associated with RA. 35/43 (81%) RA patients in a sample study had the DR4-DQ4 type, especially DQ4.1. (subtype of 4.3)
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4 hours ago, cyclinglady said:
I am sorry, my intent was not to imply that you have Crohn’s. I was trying to point out that trying to diagnose yourself could be dangerous. Not everyone fits into a “box” of symptoms. Not all doctors are perfect, but they do have years of training.
I am glad that you have found relief from eliminating lactose from your diet. It might be just as simple as that.
Consider Ravenwodglass’ suggestion about dietary changes. While not everyone needs to be gluten free, eating fewer processed foods may be better for your health. It might reduce your chances of developing an autoimmune disease. No guarantees, but the Standard American Diet has probably caused our obesity and other health issues. A fascinating and long debated subject worth researching.
Yes I see your point, I will go to ask. I hope it’s nothing
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36 minutes ago, cyclinglady said:
My niece has Crohn’s. The only symptom she had was occasional abdominal pain. Nothing else. We thought for sure she had celiac disease, but a pill camera caught the damage located out of reach of both scopes. Do not assume you do not have Crohn’s, let your doctor do that.
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One question, did your niece have any positive blood work?
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40 minutes ago, cyclinglady said:
disease, but a pill camera
Wow, I guess when I read stories of ibd it seemed more severe, like going to the bathroom 20 times a day and losing weight rapidly. I was afraid to get a diagnosis like IBS or SIBO. I get relief cutting dairy from my diet, and the breath test for lactose intolerance was barely positive (~17-20 ppm increase in h2), so my only curiosity left is the blood test. I was supposed to set up an appointment with a new gi a week ago-maybe I will go just to ask about the ttg
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1 hour ago, Posterboy said:
pupppy,
Here is a couple of quick google searches on the topic.
You can find the same thing yourself but basically 1 in 4 (at least in older studies) of celiac's also had or could go on to develop RA (especially) if your not diagnosed as a celiac first.
Here is an older celiac.com article about it.
Here is a more up to date study on it from 2015.
Open Original Shared Link entitled "Rheumatoid arthritis–celiac disease relationship: Joints get that gut feeling"
also have your Vitamin D levels checked.
see this latest research on Vitamin D and Arthritis from 2017 entitled "Maintaining sufficient vitamin D levels may help to prevent rheumatoid arthritis"
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I could say this almost every post.
Take a good B-complex, magnesium citrate a Vitamin D and you will help many of your problems.
I say a good b-complex because B's work together in the body to manage stress/inflammation in the body.
see this research on B-6 and Arthritis.
Open Original Shared Link entitled "Vitamin B(6) supplementation improves pro-inflammatory responses in patients with rheumatoid arthritis."
and this pioneering work by William Kaufman now deceased about his discoveries about arthritis from the early 50s now forgotten in the medical world. he (dr. kaufman) pioneered (when vitamins where still relatively) new to the medical world the use of Vitamins in doses above the RDA to treat inflammation and arthritis in his patients. and found out frequency of b-vitamins are as or more important as dose size.
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because B-vitamins are water soluble we quickly become low and if not taken 2/daily it is hard to every catch up on being too low at least for a period/cycle of time like say 3 or 4 months then frequency can be tapered to a maintenance dose of once a day.
This is especially true if you are going through something very stressful in your life.
see this livestrong article on B-Vitamins and stress.
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and we know B-Vitamins can help Celiac's.
In my late 20s before I received my Celiac diagnosis taking Magnesium and Vitamin D (I was low in it) helped many of the aches and pains of my early onset arthritis (joint pain) symptoms.
Here is a livestrong article on Magnesium and arthritis.
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My symptom's improved remarkably taking both Magnesium Citrtate, Vitamin D and a good B-complex.
search for Ennis_tx, the posterboy or knitty kitty on this forum we all have been helped by either a B-complex, + Magnesium and or a B-complex + Vitamin D supplementation.
Here is a good thread on vitamins celiac should take.
Your vitamin D levels will probably be low if they have checked you lately.
I hope this is helpful but it is not medical advice.
2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.
Posterboy by the grace of God,
Wow thanks. That is some really good information. Yes my vitamin D was very low around two years ago when the results came back, it was 7. The doctor said to supplement and eat more dairy (can’t do that now). I had been ignoring it completely, I never realized the link between RA and vitamin D. I will definitely start supplementing. As far as B vitamins go I eat meat, trying to keep it limited to seafood.
I don’t think I have celiac disease. I don’t have the genes and all my tests were negative except for the ttg igg. My iron levels are fine too. Some type of immune response is going on however, I wish I knew ? I don’t want to pester my doctor over what may be nothing
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1 hour ago, Posterboy said:
pupppy,
I agree with Ravenwoodglass. You should give the gluten free diet a try if you are through with all your celiac testing unless you have been sick lately from something else on the UChicago list.
To answer your question.
See this UChicago link.
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It should be noted. Though I did not see their source material other food allergens are on their list including milk ie. lactose etc.
Many time the milk allergy is to casein not lactose. Try some Kefir 99% lactose free to see if it the casein protein in milk.
Here are two threads that might help you.
One who had a question about Giardia possibly causing a similar issue/question.
and one by the user sugarcube who reported getting better (ttg went down) after getting over a Giaria infection.
https://www.celiac.com/forums/topic/113893-can-treatment-for-giardia-reverse-active-celiac/
I hope this is helpful but it is not medical advice.
Good luck on your continued journey.
Posterboy by the grace of God,
I tested negative for all parasites and I haven't been sick in over 2 years. I also had the hydrogen breath test done which came back positive for lactose intolerance
This may be a wild shot in the dark, but is there any association between ttg igg and rheumatoid arthritis? Both my grandmother and aunt have it, and it says the DR4-DQ4 is associated with it.
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3 hours ago, ravenwoodglass said:
You do have that low positive so hopefully the doctors are looking for the cause. I know there are other disorders that can raise that just a bit above positive. It won't hurt to give the diet a good strict try for a bit to see if it helps as long as you are completely done with celiac related testing. I don't understand all the info you have about genes but I do know that there are folks that are firmly diagnosed celiac and don't have one of the two genes for which they usually test. I am one of those oddballs as I have two copies of a rarer celiac associated gene, DQ9.
Which disorders? My paternal side have rheumatoid arthritis and psoriasis. It was 10 when I had it checked just last month (which is what led me to get the entire panel). I was hoping, if everything came back negative, that the ttg igg would decrease also and just be a fluke, but it seems to be going up. ?
I had mainly digestive problems which is what led me to get tested in the first place, but it seems like it was just lactose intolerance. The only other digestive diseases I can think of are crohns and colitis, but those are very severe, and I don't have bloody #2's
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2 hours ago, ravenwoodglass said:
You do have that low positive so hopefully the doctors are looking for the cause. I know there are other disorders that can raise that just a bit above positive. It won't hurt to give the diet a good strict try for a bit to see if it helps as long as you are completely done with celiac related testing. I don't understand all the info you have about genes but I do know that there are folks that are firmly diagnosed celiac and don't have one of the two genes for which they usually test. I am one of those oddballs as I have two copies of a rarer celiac associated gene, DQ9.
I don't understand the genetic info either but after googling it seems like DQA1*01 = DQ1. And DQB1*04 = DQ4. So DQ1 and DQ4.
Edit: DQ1 actually seems to split into DQ5 and DQ6, and upon further investigation it says DQA1*0103. This is listed under wikipedia as DQ6.1. So I have DQ6 and DQ4 (DQB1*0405 = DQ4.3/DR4-DQ4)
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Hello, I came back negative on all the celiac tests including the gene test at labcorp except for the ttg igg, which was 12 (range 0-5). My iga is low, but I came back negative on the dgp igg and the gene test which I understand ~100% rules it out. Does this indicate anything other than celiac, or should I ignore it?
Results
Deamidated Gliadin Abs, IgA 3 units 0 - 19 Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30
Deamidated Gliadin Abs, IgG 3 units 0 - 19 Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30
t-Transglutaminase (tTG) IgA <2 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstr- ated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.
t-Transglutaminase (tTG) IgG 12 High U/mL 0 - 5 01 Negative 0 - 5 Weak Positive 6 - 9 Positive >9
Endomysial Antibody IgA Negative Negative 01
Immunoglobulin A, Qn, Serum 65 Low mg/dL 90 - 386
Celiac Disease HLA DQ Assoc.
DQ2 (DQA1 0501/0505,DQB1 02XX) Negative 02
DQ8 (DQA1 03XX, DQB1 0302) Negative 02
Final Results:
DQA1*01:SXYS,03:RV
DQB1*04:AYGMA,05:BEFZC
Code Translation:
SXYS 01/04/05/12
BEFZC 01/07/12/18/27/29/30/31/32/44/45/103/104
/105/107/133/137/139/144/148/150/152/155 RV
01/02/03/04 AYGMA
04:02/04:11/04:13/04:23/04:30/04:32/04:39 /
04:41N
The patient is not positive for any of the HLA DQ risk alleles. Celiac Disease risk from the HLA DQA/DQB genotype is approximately 1:2518 (<0.04%).
I am happy because it supposedly means I won't develop it, so I can rule it out (?). However I am wondering what could cause the ttg igg to be elevated. My parents side of the family do have autoimmune diseases so I am just wondering if I should look into it.
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1 hour ago, kareng said:
I am probably still going to go with the Celiac experts who interpret these blood tests over the laboratory.
It's not just quest, it's also mayoclinic, the American College of Gastroenterology, ARUP labs, and most algorithms out there. Partial iga deficiency still counts as iga deficiency. As long as it's below the range, the standard is to order igg tests
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edit: I am not trying to say your source isn't experts. They could be right, but even so if the iga is low then igg tests should still be ordered just in case. Better to catch everybody than gamble on the results (potentially false negative)
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5 minutes ago, kareng said:
But , if you read the link, the numbers need to be much lower to effect Celiac testing.
Well that link is wrong, every testing algorithm I've read stated that if your iga is below the range they order igg tests, and if any result is positive or equivocal proceed to biopsy. There is selective iga deficiency which is <1 mg/dl, and partial iga deficiency which is above that but below age matched ranges. I don't know where they got 20 mg/dl from-it is an extremely random cutoff and they don't cite any sources. So I don't trust that.
I have seen samples that are slightly below the range for total iga, and test negative for ttg iga.
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5 minutes ago, kareng said:
They wouldn’t be deficient if they are still in the normal range. But this test and it’s range was not developed for Celiac disease. So the ranges aren’t relevant to Celiac. That’s why the deficient for Celiac testing is different then the range printed on the test result.
Yes, I understand it has nothing to do with celiac-it measures how much iga your body makes to validate the test. I agree he is not iga deficient because it is in the normal range. What I am saying is, since it is in the low end of normal, it could throw off the results somewhat and give a negative ttg iga.
I meant this as an explanation to why his ttg igg was positive, and his biopsy was positive
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On 4/12/2018 at 3:42 PM, kareng said:
Your total IGA is not too low for Celiac testing. The test range isn't specific to Celiac.
"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."
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You and your link are wrong. Algorithms for testing state that if iga is out of range they should test for igg.
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On 4/12/2018 at 3:45 PM, cyclinglady said:
Your Immunoglobulin A (IgA) is low or below range, but it is enough to determine if the celiac tests work. It would have to be close to zero. So, two negatives is probably correct. However, some celiacs are seronegative. Some, like me, do not test positive to all the celiac tests (DGP, TTG and EMA). (I test positive to only the DGP). Some people at the time of testing might gluten free or gluten light. In those cases, an endoscopy may be ordered.
Do you have any deficiencies like low iron or B-12? That can also help determine a celiac diagnosis. Or do you already have another autoimmune disorder, like Hashimoto’s Thyroiditis or autoimmune diabetes?
I am sorry to hear about your son suffering;g from EOE.
You're wrong. Partial iga deficiency is still iga deficiency and the doctor is supposed to run igg tests.
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You have iga deficiency... it's called partial iga deficiency. Anything under the range is iga deficient and can invalidate the iga test. According to mayoclinic's algorithm they are supposed to run the igg tests so you are right. I don't know what that other link is saying, but I think you are right
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I'm confused as well-isn't your IGA on the low end of the range?
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Did you have it?
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On 6/1/2018 at 8:30 AM, Carolina said:
Hi all. I have posted here before about my 11yo being diagnosed with IBD and Celiac this past October. She has been a bit of an unusual case even within the typical variance of any IBD/Celiac patient. I am a voracious researcher and quite stubborn so I sought out a 3rd opinion recently because her first 2 GI's were never in agreement and always left me uneasy. I am more active on IBD forum, but curious to hear from the Celiac side of things as to how common a colitis to her degree is. Pediatric IBD tends to be much more aggressive than adult on-set in case that is new information to anyone.
Summary I wrote for the Pediatric IBD folks...
Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.
First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the gluten-free diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with gluten-free diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.
Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.
At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and gluten-free diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.
Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...
He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.
I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.Any update on your daughter? Did she end up having celiac, or was it confirmed to be IBD? I've never heard of celiac causing inflammation in the colon.
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Any update on this story? Why did your doctor say you were 'gluten intolerant' but not celiac? She sounds incompetent
Ttg igg causes other than celiac
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Edit: nvm I have dq5/dq4