Celiac or not?

[rihannion]

Hi all. I was hoping you could help me decipher my lab results. I got tested for celiac (because of long-standing symptoms which I will post about separately) and the results were negative BUT the thing is I was on a gluten-free diet (to my knowledge):

 

 

Deamidated Gliadin Peptide Ab IgG

0.5 EU/mL

(0.0 - 4.9)

 

Deamidated Gliadin Peptide Ab IgA

0.5 EU/mL

(0.0 - 6.1)

 

TTG IgA

0.2 U/mL

(0.0 - 10.3)

 

Anti-Endomysial IgA

Negative

(Negative - )

 

IgA

219 mg/dL

(44 - 441)

 

I guess my doc ordered it because I had experienced a week of really bad indigestion/heartburn, so maybe she thought I wasn't completely gluten-free. 

 

Does anyone know any details on these results? Like if the levels gear towards or away from Celiac? My numbers seem extremely low, suggesting that I am far from gluten-intolerant. Even if I thought I was gluten-free but eating traces of gluten, is it possible to get these results? Similarly, is it possible I was gluten-free but for some reason still got the indigestion/heartburn symptoms and thus the test was not accurate? 

 

What should be my next step? She told me to start eating gluten again if I wanted to do an endoscopy. Since starting on gluten, my mouth sores are back, I am as gassy as ever, and I am tired. Should I go ahead and do the endoscopy? How expensive would that be? I feel like giving the gluten-free thing another shot because I was feeling better before my indigestion experience. Any advice is greatly appreciated!

[rihannion]

Hello. I am 23 years old and seeking some advice from those of you familiar with Celiac Disease, its symptoms, and the struggle to get diagnosed. I know my post is long, but I am lost and could really use your help.

 

My soap opera of symptoms

- I was always gassy growing up (unfortunate I know) but never really had any other noticeable symptoms or dislike for wheat (I loved me some breadsticks). My periods have always been a little irregular.

- In college my digestive issues progressively got worse even though I developed a healthier diet and stayed very active by playing two sports and getting into running.

- By my senior year, I got weird about food...and really was not eating many carbs, but I always had cereal or a bagel for breakfast. This is when the abdominal pain and diarrhea were at their worst. For like 6 months I would be crippled by abdominal bloating and pain. I would take a crap-ton of Tums and Gas-X and curl into a ball on my bed at night. In the morning, after eating, I would have huge amount of D. Pleasant, I know. 

- During this time, I realized I could eat whatever I darn well pleased and I would continue to lose weight. I went from 140 to 118. 

- Then I graduated, came back home, and things sorta regulated...my symptoms sorta just went away and I gained some weight back (up to 130). However, I started to notice little sores in my mouth and swollen gums that would easily bleed (this would persist)

- Then in the fall the same symptoms from college creeped back along with new ones - more bouts of D and constipation, funny little pains in my lower abdomen, and a sore lower back. By December I started feeling real crappy even though my physical exam showed nothing significant, just low blood pressure. My usual low-carb diet changed because of the holiday season and I would have sharp low abdominal pain, and really bad lower back pain...like to the point I could not walk. I had no energy, did not want to work out, was depressed, did not want to hang out with anyone, and basically just laid on the couch - bloated and grumpy.

- Went to my doctor, got an ultrasound for ovarian issues and a colonoscopy (family history of colon cancer) - nothing, thank goodness.

- Got into the low FODMAP diet, helped for a while but symptoms came back

- Went gluten-free for about a month and actually felt better, though not 100% (no more mouth sores or stomach pain, and less bloating and more energy...but pooh was not perfect)

- Reintroduced gluten, started feeling crappy (noticed my nails were really brittle), went back to gluten-free

- Felt better but still had some issues with my pooh and also I do know if I was 100% gluten-free but I was close. Then I had a really really bad case of heartburn/indigestion that lasted for a week. It started with shooting pains in my chest then a burning sensation and heaviness at the bottom of my breastbone.

-Went to my doc...did heart stuff...definitely was not cardiac related...so just really bad trapped gas. She press on my stomach and it was definitely tender (I had noticed this in the past)

- Took blood for Celiac, and also suggested H. Pylori or some other bacteria issue in my gut...told me to go back to eating gluten to see what happened and for future procedures, like an endoscopy.

- As I waited for results, I ate gluten. Now I have three mouth sores, my joints and back ache like crazy, I am sooo bloated/gassy, and constipated. I took long afternoon naps for three days straight, and did not want to work out. NOT FUN! 

 

I just got the test for Celiac and it was negative BUT I was trying to be gluten-free in the weeks prior, so I am not convinced to rule it out yet. Am I right in this? Do you guys think it is Celiac or something else??? 

 

 

[LauraTX]

Welcome to the forum!

 

I merged your two posts into one, so people can get a complete picture of your issues and give you more appropriate answers.  Your blood tests while on a gluten-free diet are of no use in the diagnosis of Celiac disease, because they could be a false negative.  Prior to your endoscopy, you need to be eating gluten for 2 weeks.  If you want to repeat the bloodwork and have it be accurate, you need to be eating gluten for 12 weeks.  If your doctor thinks you do not have Celiac disease based on the bloodwork done while on a gluten-free diet, let them know that is incorrect and the tests could be a false negative, and have them redone.

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The endoscopy center should give you information on the cost before they schedule you an appointment.  Usually they will get it pre-approved through insurance and give you a good idea of your copay, and collect that up front.

 

Once again, the blood tests could be false negatives since you were on a gluten-free diet.  Stay on the gluten challenge if you can handle it, and get them re-done after week 12, so you can have a complete picture.  If the endoscopy comes back with conclusive damage, you may feel comfortable forgoing the blood tests, but remember if you ever want them in the future you will have to go back to eating gluten. If you do have Celiac disease, it will take at least a few months to totally feel better and heal up on a gluten-free diet.  Meanwhile, since they are already checking out a lot of things, you may want to ask to have your gallbladder checked out, since it is in the area below the ribs where you describe the discomfort.

[nvsmom]

Ditto LauraTX.  If you were gluten-free for a long while before testing, that will cause false negative results.  If you were only gluten-free for a week or two, chances are that it did not affect the results, but there is no way to know for sure except to do the 12 week (or 2 -4 week for endoscopy) and retest.

 

If you don't retest in the near future and continue to eat gluten-free, make sure you are 100% gluten-free.  Small amounts of gluten, a crumb, will set back your recovery.  Only a 100% gluten-free diet will be of any help.  Keeping a food and symptom journal may help you track your recovery and stay gluten-free.

 

Best wishes and welcome to the board.