aimless75

Hang in there Mom.

 

Forgive me...but if you are all being tested for Celiac Antibodies...do you suspect a gluten issue?

 

Again...sorry if I miss understood.

 

Welcome to the Forum...feel free to read as much as you like, hang out a bit and ask questions..always someone hanging out here

Yes, I have been undergoing tests for a few months and am in the middle of a gluten challenge and am scheduled for a endoscopy/colonoscopy on Wednesday to rule out Celiac, Chrohn's and eosinophilic gastritis.  I had my daughter tested because she is so small and fell off her curves but she was negative, but borderline.  My son has a lot of stomachaches, foul and yucky BM, joint pain (told growing pains), and a lot of allergy issues that he ended up being on prednisone last year and now is on Singulair daily.  I finally asked to have him checked for a bunch of stuff because I planned on taking them both off gluten and dairy for a month to see if things got better, but I wanted a baseline before.  I'm still waiting til they open so I can call but our pediatrician of course is out of office all week so hopefully someone else will tell me.

Hi,

I have been having my kids tested for a bunch of things including celiac and I just got back my 7 year old's son's tests and it says SEE NOTE for both tTG IgG and tTg IgA.  When my daughter and I had ours done the numbers were shown, but they were both negative.  My daughter was close (.87) when Kaiser reference range is >.90.  So, of course now it's 9pm and I can't called and I'm a little bit freaking out because I'm assuming it's only bad results that they won't show on the automatic lab emails (now I have to wait to talk to the doctor to get the results).  Did this happen to anyone else with kaiser or did your positive results also come up on your lab email???

My Dr ordered a bunch of bloodwork to check my nutrition and vitamin levels. Results are slowly coming back but still waiting for some more. So far my Alkaline phosphatase is pretty low. Anything under 30 is low and mine is 24. A few other levels are borderline:

Ferritin 22 (borderline low)

RBC 3.97 (borderline low)

Potassium 3.8 (borderline)

And vit b12 is 482 but it says its normal

Anyone familiar with low Alkaline phosphatase?

Hi there,

I am in the testing phase right now too.  My blood work has all been pretty normal except my eosinophils are really high.  The only other thing back through my labs for the past 10 years is that my alkaline phosphatase has dropped down and now is a little over 30 (used to be in the 80s).  Most of what I read is that only high levels are considered problematic but a few places said a low number could mean you are not absorbing nutrients as well as you should.

Have you gotten an answer from your doctor yet??

I am in the middle of a gluten challenge until my colonoscopy/endoscopy in 2 more weeks.

Good luck!

Hi, I am fairly new here and still in the testing stage.  I was wondering if bouts of symptoms were common in celiac or NSGI?  I have been looking back through my medical records and almost every year or every other year I went in to see my GP for stomach pain, give Prilosec and others but none of those worked, I just seemed to get better on my own after a few months.  I always thought I had an ulcer.  Now with my latest bout, I have had diarrhea for 3 weeks, abdominal pain in my upper left side, lost 7 lbs in 2 weeks and some of the days have been in bed with a pain like a knife is in my stomach.  I''m also starting to lose a lot of hair.  I went gluten-free a few months ago for a month for an elimination diet and I was adding things back and after about a week of gluten all of this started.  I've also noticed that everytime I have stomach pain, my blood eosiniophils are also elevated.  A few years ago when they were really high (absolute over 1800) they did a bone marrow biopsy, abdominal ultrasound, and echo to rule out a bunch of stuff but never really did anything about my stomach pain and again after a few months it went away.  I have had both Grave's disease and then Hashimoto's disease in last 20 years but it's well controlled with meds.

I finally saw a GI nurse and she has scheduled me for an endoscopy/colonoscopy in 3 weeks and I have to add gluten back in.  So, I'm very tired and foggy again which is what I noticed went away when I took it out before.  They are ruling between IBS (which is what they think it is), Celiac, Chrohn's, and Eosinophilic Gastritis.  My pain doesn't subside after I have a BM and I don't really feel cramping, just more of a dull ache/burning sensatin.  She gave me something to relax my intestines and that made me really cramp and it hurt a lot.

So, Are symptom bouts every few years common  and does anyone else have/had high blood eosinophils???

Thanks for any info!

Hi,

I have only been on this site asking about my daughter, but I have been having a lot of problems lately so I was hoping someone would have some advice!

Two months ago I did an elimination diet - no wheat, dairy, corn, soy, sugar, eggs - and then did a reintroduction. My energy was way up during this time ( I have always felt tired and have had on and off stomach problems. )  Eggs and dairy didn't seem to bother me at the time.  When I added a little bit of gluten, I got the "foggy brain" and my fatigue came back so I knew I was gluten sensitive.  So, I took it back out and felt better.  But, then I decided I wanted to be tested for celiac so I added gluten back in for only 3 days before I was tested.  The first night I had a burger with bun my stomach hurt so bad and I looked like I was 6 months pregnant.  The next day it went away and the rest of the time I didn't have any other symptoms.  I tested negative tTg IgG and IgA both .22  (<.90 negative).  I went on vacation for a week and had gluten a few times but no symptoms.  When  I returned I decided to take gluten back out of my diet and I have had terrible problems.  At first I was really bloated, gassy, abdominal pain, and diarrhea at least once a day.  No matter what I ate it didn't seem to matter  It's been almost two weeks now, and the bloating has gotten better and so has the pain, but the diarrhea is worse - 2-3 times per day now.  I usually still have one normal BM but it floats each day.  I have started making a food journal and noticed I ate gluten a few times in the past week (teriyaki sauce and I was hoping to be tested for AGA (Gp said no), so I had a brownie).  I have also lost a few pounds in the past week.  My GP tested my stool for bacterial and parasite infections which were negative.

So, I guess my question is could I have not reacted to gluten for the week I was on vacation and then just started reacting?  And then reacting pretty bad when I am exposed to it accidentally over the past week?  I'm also wondering if maybe I'm sensitive to dairy and corn now.  I've been eating a little bit of cheese and corn chips.  The diarrhea can hit at anytime of the day, and most days I feel better by the evening time for some reason.  My doctor justs says I have IBS and seems pretty done with me.  I am not just going to accept IBS - obviously if my bowel is irritated, something is making it that way, right???  I just don't know what to do and can't just accept I'm going to have diarrhea everyday forever.  I was thinking of either doing a juice fast for a few days to clean things out and then add things in slowly again.  I have history of thyroid disease (both Grave's and Hashimoto), infertility, multiple miscarriages, anxiety issues, allergies, hair loss, and off and on GI issues.

Thanks for any advice!

I simply stated that I am probably NCGI and so I'm not sure how you got that I said it was a "lesser dx".  I do not believe that at all, I know that celiac is only one small part of the bigger picture of gluten sensitivity.  After having thyroid disease for 20 years, infertility, multiple miscarriages, bacterial gastritis bouts, and anxiety issues and come to find out that those are all symptoms of gluten sensitivity, I only wish I  knew all of this a long time ago.  I was only asking a question about my daughter's blood tests.

Until I've started researching celiac and gluten sensitivity I was probably in that group of thinking if you didn't have celiac then you were fine.  Now, after reading multiple books and studies it's amazing that this information is not out there more and that more docs don't test for it or mention it more.  I have been back to being gluten-free and been cooking and making lots of things with different flours and my daughter doesn't like any of it, so if she is dx it's going to be tough.  My middle son on the other hand usually likes it all so he would be easier to convince.  I know I'm going to have to fight a little with my doc and pediatrician to get more thorough tests done without having to go to an outside lab that I would have to pay for.  My husband is also one of those that if the blood tests are fine, then everything should be fine.  When I told him she was very close to the positive range he said "but she's negative!"

Is there any other tests you would recommend for me since I'm already gluten free?  After 2 months of being gluten-free, I added gluten back into my diet for 4 days before the test which was negative, and then went on vacation for a week and ate some gluten.  Since I came back last week, I took it back out, and since then I have had horrible abdominal pain, bloating, gas, diarrhea for a week.  I've been very strict all week of being gluten-free but no matter what I eat my stomach still hurts and is bloated.  I am being tested for a bacterial infection but haven't gotten results back yet.  My doc thinks it's probably viral, but I'm not throwing up.  I think maybe I inflamed myself by adding gluten back in and then was more susceptible to a bacterial infection.  I've thought of testing a stool sample through a private lab online that says they can test gluten sensitivity in the stool for up to a few years after being gluten-free.  Thanks for any advice or info!

"So, I don't think I have celiac but rather a gluten sensitivity, since I don't have to many GI problems."

How you perceive your GI tract as functioning has no diagnostic bearing on if you have Celiac Disease, or not.

I'm not saying you aren't sensitive to gluten, quite the opposite actually, since you feel better off it.

What I am saying is you can't know without testing (which requires a trial). I'm not telling you to do a trial, either. What I'm saying is that you don't know, and you should NOT consider yourself "just NCGI"...

Which also brings up the issue that NCGI is NOT a "lesser" dx... To date, no one knows WHAT the health implications of NCGI is. It may be dangerous to underestimate NCGI. There are people in this board who have serious problems with gluten, and I would venture to say quite severe health issues because of it, who are classified NCGI.

I'm not trying to be a hard nosed b%$@# here, but this attitude pervades in the medical community and the gluten-free community - that NCGI is somehow less severe...including the ability to not be as careful about avouding gluten. And it needs to stop.

The truth is that medically, it is not known exactly what NCGI is or does - other than it doesn't show up on Celiac testing or cause intestinal damage severe enough to be called celiac disease, and it probably involves a different response from the immune system.

What is definitely known is that people who are NCGI can get very, very ill - apparently from gluten damaging their bodies.

I simply stated that I am probably NCGI and so I'm not sure how you got that I said it was a "lesser dx".  I do not believe that at all, I know that celiac is only one small part of the bigger picture of gluten sensitivity.  After having thyroid disease for 20 years, infertility, multiple miscarriages, bacterial gastritis bouts, and anxiety issues and come to find out that those are all symptoms of gluten sensitivity, I only wish I  knew all of this a long time ago.  I was only asking a question about my daughter's blood tests.

I agree with Nora, the DGP is known to be a superior test for celiac disease in children. It would be a good one to request.

 

This is a report on celiac disease. On page 12 it discusses how sensitive the tests are (menaing how likely they are to catch cases of celiac disease). The TTg IgA misses 5-25% of all cases of celiac disease. Open Original Shared Link

 

I would be a bit concerned about the near positive tTG too. Those tests show intestinal damage is happening. It is not unusual to have low levels of tTG's in the blood but her's is very close to positive. If she will be continuing to eat gluten, I would have her tested, and test the DGP tests too. If that is negative still, and she will still be eating gluten, I would retest her every year or two because celiac can hit (full force) at any time.

 

It is very possible that she has Non-Celiac Gluten Intolerance (NCGI) too. It is thought by some that the AGA IgA and AGA IgG can show NCGI as well as celiac gluten sensitivity. They are the only tests that show a snesitivity to gliadin where as the other tests (DGP's, tTG's, and EMA IgA) test for intestinal damage. If you suspect NCGI, I would advise going gluten-free because it can affect your health to almost the same degree as celiac disease can - just the villi damage is missing.

 

And yes, you would have to start eating daily gluten again for at least 1 month (2-3 is better) to have an accurate test result. If you suspect celiac disease for yourself, you might want to have nutrient level testing done as celiacs are often low in iron, ferritin, calcium, D, B's, potassium and a few others like zinc. Thyroid disease is present in over 10% of celiacs too so you should get that checked as well.

 

Best wishes to you both.

Thank you Nicole for the info.  I have been reading a lot about it so I will ask for additional tests like the AGA and DGP.  My daughter is very analytical so it is a little tough to convince her to cut out her favorite foods without proof:)  They did check her iron, Vit D and ferritin which were ok. 

I have had thyroid disease for 20 years now - Graves when I was 18 and then 10 years later Hashimotos after my daughter was born.  I have on and off stomach issues and along with my mother having stomach problems forever and osteoporosis and thyroid disease, we have lots of risk factors for celiac or NC gluten intolerance.  I'm going to try to talk her into getting tested also.

Hi, This is my first time here and I have a few questions I'm hoping someone can help me with.  I went gluten-free 2 months ago and noticed a big difference in my energy level and when I reintroduced gluten I started feeling foggy and tired again so I took it back out and felt better again.  So, I don't think I have celiac but rather a gluten sensitivity, since I don't have to many GI problems.  Anyway, I asked my GP to test me for celiac but I had already gone gluten free but she said it wouldn't matter (which from what I read, is not right).  She only rain Transglutiminase IgG and IgA, and both were .22  (<.90 is negative).

Anyway, I decided to have my 9 year old daughter checked for a bunch of things since she has fallen down quite a bit on her growth charts the last few years and has stomach aches a lot.  She is in the 6th%tile for weight now. Her thyroid and everything has come back normal.  

Her tTg IgG is .87 and IgA is .36 (<.90 is negative).  Should I be concerned that her IgG is so close to being positive or is the IgA a better indicator?

Those were the only tests that were run on the celiac panel.  I was thinking of asking for a few more tests like AGA or DGP.  Any suggestions?

Thank you,

Amy