Dr Has Never Diagnosed Celiac And Cannot Interpret My Result. Help Please.

[gemini07]

Hi everyone,

 

I am new here and have a few questions.  I am very confused.  I have had symptoms and been sick for a very long time.  It has been getting worse the past 12 months but I have felt this way for at least the past 8 years and I am 28.  I get terrible nausea and daily migraines.  I have been to the ER, urgent care clinics, doctors.  They keep telling me it is food poisoning, and keep giving me pregnancy tests, and have done ultrasounds of my appendix, gallbladder, kidneys, and a brain MRI. After my latest visit to urgent care I was doing research online and figured that gluten might be the cause. I realized I feel sick after I eat a piece of bread, or a bowl of pasta, or anything with wheat/gluten.  

 

I immediately stopped eating gluten to see if it would help and I could not stand being sick anymore.  I requested a Celiac panel from my doctor.  It took them almost two weeks to order it.  Could stopping gluten for 2+ weeks have affected my results? My Dr. said she has never diagnosed anyone with Celiac before and did not even know what tests to order. 

 

My results were:

TTG IGG 7H   U/mL (<6 no antibody detected, >or = 6 antibody detected)

TTG IGA <1    U/mL (<4 no antibody detected, > or = 4 antibody detected)

ENDOMY IGA negative

ENDOMY A TITER SEE BELOW

Result Comment: TNP-Screening test Negative or Not Detected. Titer not performed. 

 

My Dr. was not sure what this means.  She thinks I might have Celiac.  She referred me to gastroenterology and I am waiting for an appointment.  Do I need to start eating gluten again before I see gastroenterology? By the time I get to see him it might be over 1 or 2 months without gluten.  The past few weeks that I have stopped gluten have been great.  My migraines completely disappeared and I don't feel sick anymore. I have not felt this good ever. 

 

Do you think I have Celiac or gluten intolerance?  Can anyone interpret my results please? Thank you in advance I greatly appreciate it. 

[cyclinglady]

You'll have to continue to consume gluten in order to get a definitive result on a biopsy (endoscopy).   

 

I'm not a doctor -- or an expert on interpreting results (but we have a few on the forum, so give it a few days).  

[emilykay405]

From what I understand (and I'm far from an expert) if the IGG is positive, it means there is gluten intolerance. Which would lead to the biopsies being performed. Once place says that only a positive IGG is not an indication of Celiac. However, your IGA is low and there are people who are IGA deficient. Being IGA deficient will lead to always negative results. Did they do a total IGA? Or are these all the results you have?

 

And as cyclinglady said, you will need to be on gluten for any testing to be accurate. We are about the same age (I'm 29), and unless there's a reason (ie you want it for peace of mind) for it you don't have to have a Celiac diagnosis whereas a young child may need a definite diagnosis for school. If you feel better off gluten and are OK with Non Celiac Gluten Intolerance then you would not have to do the biopsies.

 

That being said, I will probably be getting a biopsy done. Mostly because I want to know how much damage there is if I do have Celiac.

[gemini07]

From what I understand (and I'm far from an expert) if the IGG is positive, it means there is gluten intolerance. Which would lead to the biopsies being performed. Once place says that only a positive IGG is not an indication of Celiac. However, your IGA is low and there are people who are IGA deficient. Being IGA deficient will lead to always negative results. Did they do a total IGA? Or are these all the results you have?

 

And as cyclinglady said, you will need to be on gluten for any testing to be accurate. We are about the same age (I'm 29), and unless there's a reason (ie you want it for peace of mind) for it you don't have to have a Celiac diagnosis whereas a young child may need a definite diagnosis for school. If you feel better off gluten and are OK with Non Celiac Gluten Intolerance then you would not have to do the biopsies.

 

That being said, I will probably be getting a biopsy done. Mostly because I want to know how much damage there is if I do have Celiac.

Thank you cyclinglady and emilykay405 for your responses.  I got an appointment with gastroenterology at the beginning of October and was told that they will not perform a biopsy or do any labs that day.  The scheduler told me to bring the lab results I got from my Dr. and if the gastroenterologist feels more testing needs to be done he will send me for more labs and a biopsy outside. 

 

The main reason I want a diagnosis is for my two kids.  I have a 2 year old and a 7 year old.  I am worried that they may have Celiac or a gluten intolerance also.  My 7 year old was diagnosed with Autism when he was 2. They think Aspergers.  He just had a physical exam yesterday and has not gained weight for a long time. He is 46lbs.  From what I read, it seems like there may be a connection with undiagnosed Celiac pregnancies and kids born with Autism. Also, there is the connection of gluten and difficulty gaining weight.  He loves carbs like toast and sandwiches etc.

 

My 2 year old was put on Synthroid this week for high TSH.  His levels were tested 5 times since birth.  At birth it was normal but the last 4 times the number was slightly elevated.  He was born full-term at only 6.5lbs.  I read that undiagnosed Celiac pregnancies lead to low birth-weight babies.  I breastfed him until he was 1.  During the time he was breastfed his weight went up to the 50th percentile.  The pediatrician was concerned with the weight gain. They told me to start him on cow milk and then baby cereal.  Once he was put on baby cereal his weight dropped all the way down to the 2nd percentile and then the pediatricians said this was failure to thrive.  He stayed around the 2nd-5th percentile for a long time. Right now he is finally moving up towards the 10th percentile at 26lbs. Next week he will be 32 months old to be exact.  I am wondering if gluten is making it difficult for him to gain weight since the weight problem started when we introduced cereal. Also, I read that there is a connection with Celiac and the thyroid. 

 

I told the pediatrician about my lab results and requested the Celiac panel for both of my kids.  She said no since my kids are not symptomatic.  She said she will not order any labs for them until I get a diagnosis through a biopsy.  So I think I do have to eat gluten.  It is just so difficult to eat gluten, be sick in bed and not function, when I have two little kids. I was wondering if anyone else has a similar story?  Does anyone have children with Autism or thyroid issues?  Does anyone diagnosed with Celiac have kids that also have Celiac? Thank you.  This board has been really helpful.  

[SkyBlue4]

Thank you cyclinglady and emilykay405 for your responses.  I got an appointment with gastroenterology at the beginning of October and was told that they will not perform a biopsy or do any labs that day.  The scheduler told me to bring the lab results I got from my Dr. and if the gastroenterologist feels more testing needs to be done he will send me for more labs and a biopsy outside. 

 

The main reason I want a diagnosis is for my two kids.  I have a 2 year old and a 7 year old.  I am worried that they may have Celiac or a gluten intolerance also.  My 7 year old was diagnosed with Autism when he was 2. They think Aspergers.  He just had a physical exam yesterday and has not gained weight for a long time. He is 46lbs.  From what I read, it seems like there may be a connection with undiagnosed Celiac pregnancies and kids born with Autism. Also, there is the connection of gluten and difficulty gaining weight.  He loves carbs like toast and sandwiches etc.

 

My 2 year old was put on Synthroid this week for high TSH.  His levels were tested 5 times since birth.  At birth it was normal but the last 4 times the number was slightly elevated.  He was born full-term at only 6.5lbs.  I read that undiagnosed Celiac pregnancies lead to low birth-weight babies.  I breastfed him until he was 1.  During the time he was breastfed his weight went up to the 50th percentile.  The pediatrician was concerned with the weight gain. They told me to start him on cow milk and then baby cereal.  Once he was put on baby cereal his weight dropped all the way down to the 2nd percentile and then the pediatricians said this was failure to thrive.  He stayed around the 2nd-5th percentile for a long time. Right now he is finally moving up towards the 10th percentile at 26lbs. Next week he will be 32 months old to be exact.  I am wondering if gluten is making it difficult for him to gain weight since the weight problem started when we introduced cereal. Also, I read that there is a connection with Celiac and the thyroid. 

 

I told the pediatrician about my lab results and requested the Celiac panel for both of my kids.  She said no since my kids are not symptomatic.  She said she will not order any labs for them until I get a diagnosis through a biopsy.  So I think I do have to eat gluten.  It is just so difficult to eat gluten, be sick in bed and not function, when I have two little kids. I was wondering if anyone else has a similar story?  Does anyone have children with Autism or thyroid issues?  Does anyone diagnosed with Celiac have kids that also have Celiac? Thank you.  This board has been really helpful.  

 

My story is complicated but I will give you the shorter version. I was diagnosed IBS years ago. I stopped questioning the symptoms after a doctor told me that if I wasn't bleeding into the toilet, then it was just IBS. Nice and thorough. 

 

Our first child died of intrauterine growth restriction (of unknown cause). My second was small for dates, diagnosed at 3 years old with failure to thrive and continues to have growth issues at 11 years old...specifically with gaining weight. Honestly, he looks like I starve him. He has Aspie traits but never diagnosed as such. I've had several children since and they are assumed healthy. After each pregnancy I gained yet another diagnosis. My signature lists a couple of them.

 

My 11 yo spent the last year going through testing for GI symptoms and poor weight gain. All that came of those tests was a diagnosis of Lactose Intolerance. I'm thankful but it leaves lingering questions. I'm getting copies of all of his labs and tests to look over myself.

 

So anyway, it has been a long journey and I still have a long way to go.

[Rucko]

Hello - your story sure sounds familiar.  I got the run-around too, for 25 years to be exact.  It was always something, but they never thought of celiac disease.  

 

I don't think stopping the eating of gluten for 2 or 3 weeks would affect the antibody levels that much, but I can't help you out reading the test results.  Did you feel better while you were gluten free?

 

In my case I had to wait 3 months before I got the endoscopy to confirm the celiac disease. They told me I had to eat the equivalent of 1 slice of bread every day in the month before the endoscopy.  I was in such horrible shape that I ended up with complete villous atrophy by the time I had the test.  I'm pretty sure they could had confirmed the celiac had I eaten just one bite of bread daily.  I doubt the doctors really know how much a person needs to keep eating in order to get a positive result, but obviously you have to eat at least a little.

 

It's interesting that your kids are having the problems they're having, and it's good that you're wondering about the connection.  Lots of autistic kids do better when they're gluten free, but you might actually have to switch him to the Specific Carbohydrate Diet or the GAPS diet to see improvement, especially since he loves carbs.  It would be worth it though, in the long run.

 

The 2 year old needing Synthroid is also a concern.  You would think that that would be a big enough symptom for the doctor to test for celiac!  Did they test him for thyroid antibodies?  Also, if he happens to be celiac, taking synthroid probably won't be helping him enough.  If there is any damage to the villi, he won't be absorbing the minerals needed to convert the synthroid very effectively.  If that is the case he should probably be getting some combination of T3 and T4 (Synthroid is T4).  

 

The low growth rate of the boys is another suspicious factor.  My daughter who is also celiac was very tiny during childhood.  She was always in a very low growth percentile, but they didn't seem to think much of it.  She didn't have diarrhea or any of the classic childhood celiac symptoms, except she was small, so we didn't suspect anything was wrong.  I guess doctors expect to see "failure to thrive" where the kid is skeletal and has continuous diarrhea.  They don't think about slow growth as a problem related to celiac.

 

It amazes me that doctors won't test for celiac.  It's not all that expensive of a test, and yet they ration it.  Maybe in the long run, it's not that long of a wait for you to get your results first.  Or could you try to find a more cooperative doctor?  In the meantime, you can at least cut back everybody's gluten even if you don't eliminate it entirely.  

[GottaSki]

The GI (if well versed in celiac) will likely order the rest of the panel:

Total Serum IgA which is a control test to make sure you have sufficient IgA for the IgA antibody tests to be accurate.

DGP - both IgA and IgG

Along with nutrient testing as celiac prevents proper absorption of many key vitamins and nutrients.

Talk with your doctors about adding genetic testing for you..my celiac doctor had me genetically tested because my children all had many "non-classic" celiac symptoms along with negative antibody tests. Your children certainly have symptoms that could be related to celiac....don't remove gluten from their diets until you convince their doc to run the panel or find another doctor that will.

If possible...continue to eat at least a slice of bread per day until your testing is complete....some have had better luck eating this in the evening to help limit symptoms during the day...if you cant tolerate any gluten....contact your doctor - perhaps they can get you in sooner.

Hang in there!