How To Read The Numbers? Misdiagnosis? Help!

[Shalig]

Hello.

I am very new to all of this...

I only heard of Celiac last year when we had my then 15mo old daughter tested. She was 18 pounds at 9mo old and 18lb at 15 mo. Her blood tests were negative for celiac disease and an endoscopy was negative as well. She'll be 2yrs next month and she is almost 20lbs. She is persistantly constipated, bloated stomach, vas chronically fussy, and just keeps sliding off of the growth charts. With all of this we now just wait. Her GI dr has her on adult doses of Miralax daily and the doctor lets me feed her whole sticks of butter if she wants. We keep adding supplements (benecal, medical food) and any extra calories to her food just to put pounds on. She showed some irritation in her stomach lining during the endoscopy, so the doctor also put her on an acid-inhibitor. Now we just wait and see with her... she's generally happy and looks well for the most part, just small. She just grew out of her 6-9 month clothes.... she's 2. But I guess I'm not big (5'-3", avg build). I guess we're still waiting for some change with her.

So about me, in reading about celiac disease for my daughter... my ongoing GI and etc issues started making sense. I am 34, lactose intolerant (as of 10yrs ago?), constipated most of my life, migraines since I was a kid, neuritis, and since pregnancy of my 2nd child (mentioned above) I have developed IBS. Burping, nausea, abdominal pain and throbbing, constipation worse, and strange bouts of achy flu feelings... very bizarre. I wrote it off as IBS and stress. I decided to try a gluten-free diet in the new year and just see if improved. WOW. I felt better slower and slower... in a few weeks I was mostly normal-ish on no-gluten. My husband and I joked that I even started going to the bathroom by myself (w/out laxative help). Went to my dr for a followup on IBS and I mentioned glutenfree diet was going well. He agreed to test for celiac disease but was convinced all of my probs were from be just being constipated all the time. Lots of poop makes you feel like poop... and it made sense. He said to go on Miralax for complete clean-out and go back into gluten diet slowly for 2 weeks then we would do the Celiac panels. I did the tests a few weeks ago...

Had to go back to Dr and he said tests came back positive for celiac disease and I would need to stay gluten-free. He said I didn't need to go to a GI for confirmation....only if I wanted to. I insisted because I wanted a clear picture of where I stood with the results and I guess confirm it for real.

My results came back as:

TTG = <3

AB-IGA = 19

IGA = 227 (range 81-463)

How do I read this?!??!

My doctor is fairly young and I think pretty unfamiliar with celiac disease. So I guess with all of my research I wonder if this really indicates celiac disease. I've read so many conflicting articles and info. I am going to see a GI (waiting for call back for appt)... now I'm wondering if I should stay on the gluten-free diet if I need an endoscopy to confirm. And now will my test all be messed up because I've been gluten free for almost 4.5 months (not counting the 2 weeks I ate some gluten...). I do feel so much better off of gluten, but I think alot of people do right?? I did get loads of headaches and burps/nausea/abd pains when I went back on gluten for the 2 weeks.... I am so confused!

Does anyone have any suggestions or insight???

- Shannon

[dadoffiveboys]

Hello.

I am very new to all of this...

I only heard of Celiac last year when we had my then 15mo old daughter tested. She was 18 pounds at 9mo old and 18lb at 15 mo. Her blood tests were negative for celiac disease and an endoscopy was negative as well. She'll be 2yrs next month and she is almost 20lbs. She is persistantly constipated, bloated stomach, vas chronically fussy, and just keeps sliding off of the growth charts. With all of this we now just wait. Her GI dr has her on adult doses of Miralax daily and the doctor lets me feed her whole sticks of butter if she wants. We keep adding supplements (benecal, medical food) and any extra calories to her food just to put pounds on. She showed some irritation in her stomach lining during the endoscopy, so the doctor also put her on an acid-inhibitor. Now we just wait and see with her... she's generally happy and looks well for the most part, just small. She just grew out of her 6-9 month clothes.... she's 2. But I guess I'm not big (5'-3", avg build). I guess we're still waiting for some change with her.

So about me, in reading about celiac disease for my daughter... my ongoing GI and etc issues started making sense. I am 34, lactose intolerant (as of 10yrs ago?), constipated most of my life, migraines since I was a kid, neuritis, and since pregnancy of my 2nd child (mentioned above) I have developed IBS. Burping, nausea, abdominal pain and throbbing, constipation worse, and strange bouts of achy flu feelings... very bizarre. I wrote it off as IBS and stress. I decided to try a gluten-free diet in the new year and just see if improved. WOW. I felt better slower and slower... in a few weeks I was mostly normal-ish on no-gluten. My husband and I joked that I even started going to the bathroom by myself (w/out laxative help). Went to my dr for a followup on IBS and I mentioned glutenfree diet was going well. He agreed to test for celiac disease but was convinced all of my probs were from be just being constipated all the time. Lots of poop makes you feel like poop... and it made sense. He said to go on Miralax for complete clean-out and go back into gluten diet slowly for 2 weeks then we would do the Celiac panels. I did the tests a few weeks ago...

Had to go back to Dr and he said tests came back positive for celiac disease and I would need to stay gluten-free. He said I didn't need to go to a GI for confirmation....only if I wanted to. I insisted because I wanted a clear picture of where I stood with the results and I guess confirm it for real.

My results came back as:

TTG = <3

AB-IGA = 19

IGA = 227 (range 81-463)

How do I read this?!??!

My doctor is fairly young and I think pretty unfamiliar with celiac disease. So I guess with all of my research I wonder if this really indicates celiac disease. I've read so many conflicting articles and info. I am going to see a GI (waiting for call back for appt)... now I'm wondering if I should stay on the gluten-free diet if I need an endoscopy to confirm. And now will my test all be messed up because I've been gluten free for almost 4.5 months (not counting the 2 weeks I ate some gluten...). I do feel so much better off of gluten, but I think alot of people do right?? I did get loads of headaches and burps/nausea/abd pains when I went back on gluten for the 2 weeks.... I am so confused!

Does anyone have any suggestions or insight???

- Shannon

Your daughter should go gluten-free too - she should NOT have to be on miralax all the time - that is ridiculous! If you feel better gluten-free you have a problem with gluten - testing results don't matter as much as how you feel. All of your symptoms are that of celiac disease - ESPECIALLY your daughters! BTW - all the supplements you add won't help if the food contains gluten and makes her sick and malabsorb. I would try gluten-free with the help of your GI and see if she can come off the acid inhibitor and the miralax. So far EVERYONE I have known that's been put on miralax (about 5 people) I suggested gluten-free and 100% of them came OFF of Miralax within 2 WEEKS!! Please Please try the diet and see what happens before you keep medicating your child.

[CDFAMILY]

Hi Shannon,

I am sorry to hear you are having so many problems.

Your IgA=127 is probably your Total IgA which is in the mid range and makes it normal so you are not IgA deficient which is good to know.

Do you know the ranges of the TTG and AB IgA? The TTG looks to be normal, but one needs to know the range. You can call and ask to have the exact information and ranges.

I think if you have already been off of gluten and your family doctor is willing to call it Celiac then why bother with a biopsy? You know you feel better without it.

At this point, a biopsy may not prove celiac since you have been gluten-free for 4.5 months. That is enough time to heal. Many gastro's are pretty picky about calling questionable biopsies Celiac so you might be taking a chance and having a gastro tell you to keep eating gluten until you get the severe damage if it does not show up the first time.

Good Luck

[ang1e0251]

If you list the full test results with the paramaters for that lab, someone here can help you with the results. You do need to be eating gluten to have the endoscopy be accurate.

I guess I'm a little confused about what you want. The first part of your story made it sound like you were happy with the results of the diet. Then you seemed very unhappy with your diagnosis? Did you not come up with that dx on your own by embracing the diet?

There seems to be a lot of opinions about an IBS dx. Some think it is just a catch-all dx and don't even believe it exists. I really don't know as I'm not familier with it. But I seem to read quite a few posters who are given that dx just to later find out it was really celiac disease. Do you think that describes you?

[Shalig]

This is such a great site for information!

And in response to knowing what I want... I guess I don't even know there are so many questions in my head.

I guess there are no specific numbers to show definitive results for Celiac? I have bought a few books on Celiac and Gluten Sensitivity and both seem to say there is a difference between the two that should be known. I can do the gluten-free diet (although I miss my old favorites). It seems that with gluten sensitivity (which it seems I have on any level) you can have a bite now and again and only suffer short lived effects. Celiac is more specific and you should avoid down to the crumb. I guess that's what my big question is...

Is it Celiac or is it Gluten Sensitivity??? Can you tell that by numbers??

And in relation to my daughter, I mentioned her because I consider her in the same risk as me. I plan to apply my diet to her as well. Unfortunately her GI has already said she doesn't have it and has pretty much moved on. I'm kind of seen as the nagging mom.

I have put a call in to my dr's office to get the details on the test results with ranges.

And I don't get in to the GI until May 20. (Didn't know if everyone gets the endoscopy by standard.) I plan to stay on the gluten-free diet and just see from here I guess. Like someone said the results could be skewed because of my time on the diet already...

I'll post the numbers when I get them. THANK YOU ALL FOR YOUR INPUT!!!!!

- Shannon

[Shalig]

OK the dr's office called back with descriptions of the results. (I have to admit I'm more confused...)

TTG = less than 3

Equivical is >8 is positive, <5 to 8 is negative, <5 needs explanation

("Needs explanation??" Is this where my being on the diet for 3 plus months prior might affect this number??)

IGA-AB = 19 positive

Above 17 is positive, 11-17 is negative, below 11 needs explanation

IGA Serum = 227

Range 81-463

I'm still trying to understand what all of this means... the TTG especially.

Is it celiac disease or just gluten sensitivity??

Thanks for all the help!!!!!

- Shannon

[CDFAMILY]

Hi Shannon,

Here is a sight that explains the tests:

Open Original Shared Link

I have talked to people who have had only a positive Gliadin AB IgG with a positive biopsy. Another mother that talked to Dr. Rodney Ford said her maybe 2-3 year old tested negative for all tests except the new DGP test.

A low TtG test can mean there is not severe damage to the tissue in the small intestine...yet...or that it has healed quickly. So, a biopsy may or may not show damage. And sometimes they mess up tests...I know for a fact they did with my husband and daughter once.

My daughter and son both skipped biopsies when they had positive bloodwork. So, I say again if your doctor calls it Celiac then go for it and skip the biopsy. A positive biopsy means you let this disease go on too long and caused damage. I know that is what gastro's want to see but do you need to see it.

Another idea instead of the biopsy would be to get the DNA test done if you want to see if it is true Celiac. But to tell the truth, Gluten Sensitivity is just as serious and you have to be just as strict with your diet.

Good luck with your decisions..it is not easy.

[Nicholasmommy]

Your daughter sounds just like my son! Take her off gluten and i wouldn't be surprised if she grows like a weed! My son was about 18 pounds at 9 months and about 19 pounds at 19 months. I took him off gluten three weeks ago and he has already gained a half of a pound! Just do it, it is not like taking her off gluten is going to hurt her.

[RollingAlong]

What books are you reading about gluten sensitivity?

They sound out of date.

The latest ones, published this spring - Healthier without Wheat and The Gluten Effect would disagree with this statement:

"It seems that with gluten sensitivity (which it seems I have on any level) you can have a bite now and again and only suffer short lived effects"

celiac disease and gluten sensitive =different diagnosis, same diet.

But you will feel great!

[Shalig]

Hello all -

The books I'm reading (or should I say gleaning info from) are "The Gluten Connection" and "Gluten-Free Living for Dummies". I guess they both made mention that full gluten-free diet is the best in all cases (of celiac disease and just gluten-sensitivity), but that celiac disease was the more serious of the two in that it caused more internal damage.

But - I will admit - I read through alot of it quickly trying to get a feel for what to expect with my daughter... and then now me. My doctor, the same who said I had celiac disease and said no need to talk to a GI, is also another that said I could still have gluten on occasions but should try to stick to gluten-free. No follow up tests or anything. I know this isn't a true statement, so you see how I'm getting mixed info from sources. I still swear my daughter is suspect and again her GI flatly says shes not. No one seems to really have a good answer.

Bottom line - I will just go with my celiac disease diagnosis and run with it. I wanted to get an idea of what to prepare for with an endoscopy ... go back on gluten to show up on a test or something of the like. Plus be able to be prepared to defend my numbers if pressed by a dr. who wasn't convinced. I don't know that I want to go on gluten for 6 weeks or more just to prove a point either. I know I'd feel awful. I guess I feel if I had a firm celiac disease diagnosis then I could push further for testing my daughter and even my son (he's 4 and has GI issues as well, was tested for Chrohns a few years ago for rectal bleeding and ulcers and diahrrea... his colonoscopy showed nothing, but we have taken him off of nuts, acidy, spicy, and straight juices. They always seemed to cause accidents.) I've pretty much decided to put my daughter on a gluten-free diet anyway and trying to decide how I want to handle my son's food at school (may wait for him till summer). Should probably get a blood test on him before I start him on a diet too though..... maybe I'll ask about genetic tests... And Now I'm really rambling....

No real questions on this post, just following up.

Thanks again to everyone for your responses!!! I appreciate all the info I get!

- Shannon

[dadoffiveboys]

I was IgA antibody equivocal only and never "positive" on any of the testing. Under age 3 the testing isn't very good either and my son was like your daughter and I went through it all - including the endoscopy - and got NOTHING from it except the doctor "ruling out" celiac in my case. We went gluten-free anyways and I saw a HUGE improvement and have been such now for 2 years. I can't have even a TRACE of gluten or I have a reaction. After going gluten-free I find I am more sensitive. My father hasn't gone completely gluten-free (cheats like you mentioned and thought it might be ok) and he is feeling better but STILL having some problems. I am having no problems unless I get cross contaminated. It's your choice but cheating isn't worth it.

No doctor has EVER questioned me saying I have "celiac" - as a matter of fact I don't even have a diagnosis - nor do any of my children. If a doctor wasn't supportive, I changed doctors. I actually ended up helping my internal medicine doctor to diagnose herself with Gluten Intolerance - and now even my internal medicine doctor feels better!! (Also good to have that kinda support too ) I am not going to pursue a diagnosis either because with the way insurers are they will want to limit insurability.