I'm Sure You Get Asked All The Time, But...lab Results

[ladyhutch]

Can you help me interpret these results? I specifically want to know if they are very indicitive of celiac, or moderately...what is normal vs. what is seen? 

 

ttg AB IgA >100 H out of range

IgA Serum 96

Endomysial Antibody Titer 1:160 H out of range

 

 

Thanks

[Gemini]

Ummmmmmmm......you have Celiac Disease and I want to welcome you to the club! 

 

Your tTg/IgA is way, way elevated and that correlates to intestinal damage.  Not to worry......mine was around 200 and I healed very well.

 

The EMA test (Endomysial) is positive and that test is very specific to Celiac, meaning only Celiac can cause a positive result.  It is a little odd that your total IgA was only 96 as your tTg is quite high.  I had a total count of over 700 on that when I was diagnosed but you cannot ignore the other 2 tests which are the biggies for celiac blood work.

 

Did they run a DGP?  That test is the one which tests for the reaction to gluten in the blood.  A positive on that means you are ingesting gluten and are reacting to it and it's the test that should be repeated at least once a year to make sure you are not ingesting any after you begin the diet for awhile.  It can take a year or more for your blood work to return to normal, if you follow the diet correctly.  Are you very symptomatic?

 

At this point, you can either just follow the diet or opt to have a biopsy but the biopsy is not needed for a diagnosis, with these results.  It is a matter of personal choice.  Congratulations on getting a diagnosis....now you can get your health back! 

[ladyhutch]

Thank you for your answer. It is actually my stepdaughter's test results. I probably should have made that more clear. She is 16 and has many symptoms...They did not run a DGP, but we see the gastroenterologist tomorrow. Should I request one?

 

I'm highly ashamed to say for a long time we did not believe her, as she had a long record of wanting to not go to school, hating school, and has quite a flair for the dramatic. I feel terrible we didn't catch this sooner, but it wasn't for lack of trying...we did have her to the doctor more than 20 times over a 10 month period, tested for a multitude of illnesses. I feel terrible that we chalked a lot of it up to not wanting to go to school/anxiety.

 

Her symptoms are: 

 

Intermittent diarrhea and constipation (one week she has diarrhea, the next constipation)

Extreme gassiness (reported, not witnessed)

Extreme irritability/moodiness

ADHD

Depression

Anxiety

Acne Vulgaris

Joint pain (specifically the knees)

Bloating

Tenderness in the stomach, particularly the liver region

Eye pain

Elevated (not extreme) Alkaline Phosphatase

Digestion issues with dairy

Tingling sensations/legs "falling asleep"

Coordination issues (reported, not witnessed)

Fatigue

 

She did have a normal abdominal ultrasound in January. I know that means nothing for celiac, but her liver appeared healthy so no further action was r

 

What is the likelihood this will help clear up some of her psychological symptoms when she is permitted to go gluten free? She is currently not gluten free until she sees the specialist tomorrow to determine is a biopsy is necessary. To be honest, and by her own admission, those are the worst problem.

[RMJ]

The Ttg AB IgA and IgA serum are reported in different units so the serum level being lower than the ttg level is not an issue.

[HavaneseMom]

What is the likelihood this will help clear up some of her psychological symptoms when she is permitted to go gluten free? She is currently not gluten free until she sees the specialist tomorrow to determine is a biopsy is necessary. To be honest, and by her own admission, those are the worst problem.

Hello,

From what I have read and experienced, a gluten free diet could help her psychological symptoms. It might take a little time to see a difference. Here is a great story I came across about a child who's behavior drastically changed on a gluten free diet. It is a bit of a read, but if you get through it, you will see the difference was pretty amazing:

Open Original Shared Link

[ladyhutch]

Well, I truly hope she finds some relief and soon. Its been a hard road. We are about to go see the gastro today. I pray he will get this ball rolling quickly.

[1desperateladysaved]

Oh, I feel for this girl.  Please give her all the support that you can muster.  It is hard to understand the strange symptoms that celiac causes.  It is difficult for family members to understand and believe.  Sometimes, I hardly believe myself!  My family didn't believe I had a serious problem at first.  As time went on, my personality changed, my obvious physical condition changed, and my family started to support me better.

 

My functional medicine nurse uses a gluten free diet to help treat ADHD.  Celiac causes the body to have trouble absorbing nutrients from food.  It causes as many as 300 symptoms.  Really, devastates everything (according to my daughter taking an anatomy class) because it causes undernourishment.  Many of us have marveled at what symptoms went away after we started the diet.  I expect you all will be presently surprised.  The diet should do wonders!  I am glad you caught it when she is still young.

 

Dee

[Jmg]

 

What is the likelihood this will help clear up some of her psychological symptoms when she is permitted to go gluten free? She is currently not gluten free until she sees the specialist tomorrow to determine is a biopsy is necessary. To be honest, and by her own admission, those are the worst problem.

 

I had Anxiety, Depression and irritability/mood issues. I've never had a diagnosis of AD/HD but would guess I've had many of those symptoms too. Since changing my diet they've all responded really well, within 3 days my depression and brain fog started to lift. The world is a very different place for me without gluten in my diet. Hopefully your stepdaughter will have the same experience. Good luck!

[cyclinglady]

Yes! I was a crazy lady! I became anxious and irritable. Frankly, I just did not think well. Weird, since I used to be a very successful marketing manager before I opted to stay at home with my daughter. I blamed it on perimenopause, but it was Celiac disease. My husband and I still become irritable if we accidentally ingest gluten (he can not have gluten either).

That said, it can take months to years to heal, so cut her some slack. I finally feel normal and mentally sharp after a year of being gluten free. Watch for cross contamination and avoid going out to eat. We rarely eat out. One glutening episode can flair up symptoms that can last a week or more. Every glutening sets you back and delays healing.

I wish her well. Check out our newbie section under coping for valuable tips.

[Gemini]

The Ttg AB IgA and IgA serum are reported in different units so the serum level being lower than the ttg level is not an issue.

The reason I mentioned it, and it has no bearing on the validity of the other 2 tests, was including myself and many others I have spoken to who were diagnosed via blood work, we all had extremely elevated Total IgA, which makes sense with undiagnosed Celiac.  This is the first time I have seen antibody blood work that was so high where the Total IgA was in the lowish range.  Doesn't matter, as the blood work is very positive for Celiac.

[Gemini]

 

Thank you for your answer. It is actually my stepdaughter's test results. I probably should have made that more clear. She is 16 and has many symptoms...They did not run a DGP, but we see the gastroenterologist tomorrow. Should I request one?

Absolutely.  The DGP and tTg should be run yearly to make sure she is not getting any gluten in her diet (DGP) and to check for lingering intestinal damage (tTg).  A few things to note......many doctors make the mistake of only running the tTg for dietary compliance.  That is the test for intestinal damage and it can be elevated from other autoimmune diseases.The DGP is the one for dietary compliance.  If you only run the tTg and it's still positive after following the gluten-free diet for awhile, they will think and tell you that your daughter is not compliant and is getting gluten in her diet somewhere.  This may not be true. By running both, the DGP will tell you that.  It can take up to 2 years for tTg to normalize so be patient with that. 

 

Also, I am sure the GI will tell you she needs an endoscopy/biopsy for the stupid "Gold Standard" of diagnosis.  The problem with that is if they don't hit the spot where there is damage, the biopsy could come back negative, even though she has Celiac.  Damage can be notorously spotty.  However, with a tTg of over 100, the odds of that happening are less but it could happen. With blood work like this and symptoms, I would recommend going gluten-free for life.  She is going to start feeling so much better, there shouldn't be any doubt in her mind after a dietary trial.  EVERYTHING will get better, with time, including her psychological problems.  These are HUGE with undiagnosed Celiac.  Good luck with the GI appointment......hope you get a Celiac savvy one!   

 

........forgot to mention.......do not beat up on yourself over this.  Celiac presents in so many bizarre ways, it's only normal to doubt all the symptoms.  Do not look back, only forward to better health for your daughter.

[ladyhutch]

Thanks everyone.

 

The GI did indeed schedule an endoscopy for Monday, with her ttg level where it is, he wants to get a look in there. He is confident celiac is the cause, and scheduled us to see the nutritionist as well to get her started on the gluten-free diet as soon as her endoscopy is done.

 

I forgot to ask about the DGP when I was there. I'll ask him Monday.

 

You are all giving me great hope, that I am passing along to her. Thank you. 

[Gemini]

Excellent!  Sounds like this guy knows what he is doing. 

 

There is no reason to feel deprived on the gluten-free diet so whatever your daughter wants for substitutes, let us know. We'll steer you in the right direction! 

[ladyhutch]

I already suggested she make an account and check out the teen forum for support. I'm investigating recipes. I was a restaurant chef for 8 years of my life so I think I'll do ok. I'm gonna set us all gluten-free for the time being so I don't have to worry about cross contamination. It certainly won't hurt anyone in my household to go gluten-free except the toddler, who I plan to keep some gluten foods for, but in a sealed bin.

 

Thanks everyone for your answers. I am just praying this is our road to recovery for her.

[Cara in Boston]

I am so happy she is diagnosed and can finally start to feel better.  If you stick to the diet 100% (start as soon as the biopsy is done) she will be amazed at how much better she feels.

 

Do not feel guilty about missing the signs.  For months, my husband and I just thought our 5 year old had turned into a total brat and it was somehow our fault.  We never considered it was a physical illness.  We confessed to each other that we didn't even like being around him, he was so unpleasant.  We were all exhausted by his unpredictable behavior.  (he had no other symptoms at all.)

 

I suffered for years with anxiety/depression and brain fog.  I just assumed it was because I always felt ill or had weird symptoms (dizziness, tingling, etc.) and was sure I was dying of some terrible brain disease.  Not to mention the fact that I was convinced that my younger son was surely destined for prison or worse . . .      Who wouldn't become anxious?  For 5 years the doctors never found anything wrong and just assumed I was a wacky hypochondriac. Once my son was diagnosed, I was tested too and found to be positive.

 

Within days my energy was back, my "sensitive stomach" was gone.  Joint pain and brain fog was gone within a week. The anxiety lessened over the next few months until one day I had to actually think about it and couldn't remember the last time I felt anxious.  Other things too . . . my hair got thicker, I slept better at night, I was a more pleasant person.

 

My son's turnaround was equally miraculous.  His tantrums stopped, he stopped sobbing for no reason, he stopped saying things like "I wish I wasn't in this family" and "nobody loves me."  We had our happy little boy back.  One morning he was happily playing legos and singing to himself. I hadn't even noticed that he had stopped singing in the months leading up to his diagnosis.  I felt like a terrible mom.

 

He is now 9 years old and doing well.  He is NEVER tempted to cheat on the diet because it is just not worth it.  Nothing beats feeling good.

 

If for some reason the biopsy comes back negative (it happens) do not let the doctor tell you she does not have celiac.  Many doctors are misinformed.  Do the diet anyway and consider it the "final" test.  I don't think you will have this problem as it sounds like your doctor is one of the good ones.

 

Best of luck to you and your daughter.  Be sure all other first degree relatives get tested too - even if they have no symptoms.  I only found out I had it because of my son's diagnosis.  

 

Cara

[ladyhutch]

I already have her brother scheduled for the blood test on Tuesday. Her dad got his Wednesday and her mom has been informed she needs to get tested. 

 

I'm not testing my son (her half brother) unless dad comes back positive. I'm pretty confident I don't have it (i'm just step mom).

 

I am really hoping to see a turn around for her. She is a good kid, just has a lot of emotional problems, and I really just want to see her happier. I am sure some of it is just being a teenage girl, and I don't expect a miracle, but an improvement would be a nice relief for all of us.

 

I also think that living in pain has clouded her world. I had a back injury a while back and remember how dark and depressing it was to wake up in pain every day. Perhaps relief from pain alone will improve her outlook on life. She certainly seems more hopeful since the diagnosis and is eager to start the diet.