My Interesting IGG only Positive Result

[StudyofOne]

 

Hi,

I am brand new here, but have already learned alot from previous lurking!  I have an IGG story which may be useful to others with that s expimilar results.  So I am a 63-year-old female with no really overt signs of celiac.  Just some fatigue, some mild scalp psoriasis, and an eczema like rash on one ankle.  Also have some siblings who do have more overt symptoms.  Got tested.  Here were my results:

Total IGA - 129 (sufficient)

tTg - tTg IGA <2  (Neg)      tTg IGG 8 (weakly positive)

Gliadin Antibodies  IGA 9 (Neg)   IGG 18 (19+ is positive)

This wasn't very conclusive.  I hadn't been eating very much gluten, though I was consuming it daily.  I did a gluten challenge for a little over 3 weeks.  I could have gone longer, but doc gave me a date that he thought was sufficient.  I was eating a cup of wheatberries each day and ate some bread and spelt cookies.  This was a big increase.

When I retested, both results went DOWN!  The tTG IGA stayed the same and the IGG went down to 7.  The Gliadin scores dropped to 4 and 4 (a dramatic drop in the Gliadin IGG number).

Here is what I think happened.  Just before I tested the first time, I stopped drinking milk (cow's).  When I tested the 2nd time, I had been off milk for about 4ish weeks.  That is the only reason that I can think of to explain why my scores dropped so much despite eating more gluten.  The only reason that I even discovered that IGGs can capture immune reactions to cow's milk protein (CMP) was just reading around the internet--forums like this and some research.  It seems that IGG responses only, with negative IGA scores, could possibly mean something else is bugging you.  So this doesn't mean I don't have celiac.  I could have both.  Maybe the gluten challenge was long enough to see a drop in cmp antibodies, but no long enough to see an increase in gluten antibodies.  

My doctor didn't really care for my interpretation :-).  He said too many hypotheticals.  Wanted me to go for an endoscopy.  What I decided to do first was the genetic testing.  I have the genes and resulted as high risk.  I am not going to get the endo at this time, because I think it might be muddled.  CMP can also cause villi damage.  I don't want to get misdiagnosed as having celiac disease, if my only problem is milk and that has affected my villi.  So, anectdotally, I feel better since quitting milk.  Less tired and sleeping better.  I have suspected milk before and quit it for 8 months.  Psoriasis did not clear.  I am thinking of staying off of milk and gluten for the next 6 months or so.  I can do another gluten challenge in the future if I want, when milk is totally out of the picture.

I have copied a section from a tiny study below.  The study involves 5 confirmed celiac patients on a gluten-free diet who had tTg responses to cmp, which returned to normal once milk was withdrawn.  It also includes 4 non celiac disease patients with suspected cmp allergy.  This up and down tTg response also occurred in them.  But even the non celiac disease patients all had the celiac haplotypes HLA DQ2/DQ8.  I have HLA DQ2.

Would love to hear any thoughts or similar experiences from others.  Sorry this is so long!

Introduction

Anti-tissue transglutaminase antibodies (tTG) have high specificity for coeliac disease (celiac disease). However, positive anti-tTG antibodies have been described in non-coeliac patients.

Aim

To assess positive anti-tTG antibodies not related to gluten intake.

Results

A total of 9 cases were reviewed in which 5 cases had Marsh 3 involvement in the initial biopsy, and were diagnosed with celiac disease (Group A). They began a gluten free diet and also a cow's milk protein (CMP) free diet because of their nutritional status. When CMP was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again. The other 4 patients had a normal initial biopsy (Group B). Gluten was not removed from their diet, but they started a CMP free diet because a non IgE mediated CMP allergy was suspected. Symptoms disappeared, and anti-tTG was normal after CMP free diet with gluten intake. All the patients had susceptibility haplotype HLA DQ2/DQ8.

Conclusions

CMP ingestion after an exclusion diet can induce an increase in anti-tTG in some coeliac subjects. CMP can produce this immune response if there were no gluten transgressions. This response has also been observed in non-IgE mediated CMP allergy patients with the susceptibility haplotype HLA DQ2/DQ8.

[Scott Adams]

Welcome! It sounds like you've had quite a journey with your health. Your experience with IGG responses to cow's milk protein (CMP) is interesting. It's great that you've seen improvement since cutting out milk. It's wise to do genetic testing and consider all factors before deciding on an endoscopy. Staying off milk and gluten for a while to see how you feel sounds like a good plan.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[StudyofOne]

Hi Scott,

Thanks for the welcome!  It has been an interesting journey! One of the reasons I pursued the testing is that I want to encourage my brothers to test.  My younger brother was having terrible hip pain and had a hip resurfacing procedure.   His surgeon told him that his bones had been really soft when the surgeon had cut into his hip.  Could be osteomalacia or soft bones.  That's an unusual finding in an adult male and a red flag for celiac.  I think he will test.

My older brother stopped smoking in his fifties and suddenly developed psoriasis on his feet, aphthous sores in his mouth, and acne.  He had all this weird stuff at the same time...all possible celiac symptoms.  Have read that some research shows that smoking can be protective against the onset of celiac.  I know that's controversial and that there are many smokers with celiac, but that was his experience.  My older brother has flatly said he won't test.  He doesn't want to know and he isn't giving up bread. 😞

[Scott Adams]

Good luck, I hope they decide to get checked.