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Still Doing Something Wrong, Levels Came Back To High

KikiUSA

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KikiUSA Explorer
KikiUSA
Posted

Well I thought I had this all under control and then I went to the doctor this morning only to hear that my levels came back 77.55 and should be a 20 or under!!!!  I have changed all my dishes, and my food but I guess I still need to change my makeup and soaps and shampoo's ect...

Doc said he will recheck me in 3 months and if my levels do not come down then he will send me to a dietician for help - ___-

I feel alittle stupid and down right now.

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kareng Grand Master
kareng
Posted

How high were they before?  Mine were off the top of the level.  It took more than 6 months to get them all the way down.  That is normal.

KikiUSA Explorer
KikiUSA
Posted
  • Author

How high were they before?  Mine were off the top of the level.  It took more than 6 months to get them all the way down.  That is normal.

Doctor didn't say what they were 3 years ago but I thought I was being so careful as I throw up for hours if I get glutened so I am just in shock right now.

kareng Grand Master
kareng
Posted

I didn't realize its been 3 years.  What was the test negative last year?  Might be time to tighten up your diet and environment.

 

Do you have gluten in your home?  Maybe you need to be stricter with how its handled.  Make sure no one is using the gluten-free peanut butter or colander.  That sort of thing.  No eating out. Make sure any thing that could get into your mouth is gluten-free - shampoo, lotions,lipsticks, etc.  Re-check ingredients on everything, even things that look gluten-free.  Maybe they changed the ingredients?   Make sure your meds are gluten-free.  Drinking any of these gluten taken out barley beers?

Gemini Experienced
Gemini
Posted

Kiki..which test for dietary compliance did they repeat on you in which the levels were high?  The doctor could have run the wrong test...they do this all the time.  If they ran the tTg, that is not the correct test for dietary compliance.

tTg can be elevated from other autoimmune problems that may be brewing so it is really necessary to run the DGP or AGA IgA/IgG, along with the tTg, because that's the test which checks for gluten reaction in the blood. If you are feeling OK and are not symptomatic, then that may be another indication that your diet is fine.  You do not need to change anything until you know if they ran the correct tests on you.

dilettantesteph Collaborator
dilettantesteph
Posted

Don't feel stupid.  I'm sure that your were following all the normal recommendations for celiacs.  These work for the vast majority of celiacs.  Also, as Gemini said, make sure that the right tests were run.  Have you been feeling well?  If you establish that your blood tests were correct and are showing that you are still reacting to gluten in your diet, you may be one of the tiny fraction of celiacs who react to lower levels of gluten than the vast majority who don't need to worry about these things.  Because these celiacs are such a tiny fraction, it can be difficult to get information to help with this issue.    Generally when people talk about "gluten free" they mean gluten free to the level which does not cause a reaction to the vast majority of celiacs.  It does not mean gluten free to the level which might possibly affect a tiny fraction of this vast majority who happens to be sensitive to much lower levels of gluten.  

 

The dietician may be able to help.  It would depend on the level of training of that person in this matter.  I was lucky to have a GI doctor that was experienced with this condition of super sensitivity to gluten.    You could look at the section in this forum for super sensitive celiacs.  That may help, but even among people who call themselves super sensitive celiacs, some can eat things which others can't.  I found that just because someone said that they could eat a certain thing, and they were as sensitive as anyone, didn't mean that I could eat that thing.

 

You say that you throw up for hours when you get glutened.  Have you ever noticed any symptoms from eating smaller amounts of gluten?  After awhile I noticed that I had major symptoms from a large amount of gluten, and more minor symptoms from a smaller amount of gluten.  Sometimes when I kept eating that smaller amount of gluten, I noticed that the symptoms would get worse and worse until they were almost as bad as the major ones.  I kept careful track of my symptoms and what I ate.  This can be called a food/symptom journal.  I tried to keep a very systematic diet.  I would try to only add one new thing per week.  I found that it could take a week to notice if something bothered me.  I got my diet cleaner and cleaner and got healthier and healthier.  

 

I found it helpful to find others like myself to learn from their experiences. 

KikiUSA Explorer
KikiUSA
Posted
  • Author

This is my first blood test in 3 years. I had no idea I needed to get any blood testing done as the doctors never told me anything! My home is a dual kitchen and I keep all my food and dishes separate, I even hand wash my stuff. But I am definitely going to be stricter and recheck everything I have in my pantry!

 

Here is the paper they gave me with my results: tTG antibody, IgA   77.55 out of range    20.00 reference range

tTG IgA Reference Range

<20.00    Negative

20.00-30.00 Weak Positive

>30.00     Positive

 

tTG Antibody IgA Result   POSITIVE

 

The following results were obtained with the INOVA QUANTALite h-tTG IgA ELISA. h-tTG Iga values obtained with different manufacturers' assay methods may not be used interchangeably. The magnitude of the reported IgA levels cannot be correlated to an endpoint titer.

 

 

So this is what I got along with me being confused hahahahaha.  I really wish he would have sent me to a dietician when he first told me I had celiac.  I am going to keep a food symptom journal I think that will really help me. I know that even if I wipe my mouth after touching gluten I throw up, this is why I am confused.

 

I thank you all for your advice as it has really helped me out a lot and I don't feel so alone.  I will keep reading and researching so I can get this down right, I want to be healthy! He gave me 3 months to turn this around and I know I can thanks to all of you!!!!

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Gemini Experienced
Gemini
Posted

Here's the problem, Kiki.....they did the wrong test for dietary compliance on you.  The tTg tests for intestinal damage/tissue damage and can be positive in the presence of other autoimmune diseases.  They should have repeated a full Celiac panel to include the DGP, which tests for gluten response in the blood.  In other words, if you were taking hits from your diet, then it would pop the DGP positive and then you would know it was your diet. If DGP and tTg are positive, then I would say it's sneaking into your diet  but you only have a portion of the picture here.

 

The other telling thing is that you have not complained here of a return to symptoms and you become extremely ill from small gluten hits.  I am the same. I react violently so would know if I was taking a hit.  This is why you are confused and I don't blame you.  Please ask the doctor for the DGP test.  The older version of this test is the AGA IgA/ AGA IgG but that is not as sensitive as the newer DGP so ask for that.  Do not take no for an answer.  This is important.

 

Other AI diseases that may raise tTg are thyroid disease, which is extremely common for Celiac's to have.  I have Hashi's thyroid disease myself.  Autoimmune liver disease may raise it also.  I do not want to scare you into thinking you are deathly ill or anything but it took me a while to get my tTg into the low normal range after going gluten-free because I have 4 AI diseases in total.  My DGP was low after 1 year but not the tTg. It was from my thyroid disease but eventually, with healing, tTg is now good to go!  Other ones that can raise it include: Diabetes, Chrohn's, Rheumatoid arthritis.....you get the picture.  So, if your DGP is normal, it is NOT your diet and you need to be screened for other AI problems.

I would definitley check your thyroid because that could be the culprit...it is for so many of us.

 

Many doctors make this mistake.....I have seen it countless times on this forum.  Here you are working really hard to get better and follow the diet correctly and they do the wrong test and blame you.  :angry:  I hope this information helps you to get better answers.  Don't become obsessive about your diet until they repeat the DGP...that will rule out diet if you are not ingesting gluten.  Good luck!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

KikiUSA Explorer
KikiUSA
Posted
  • Author

Oh WOW....I will be calling my doctor on this right away!!!!! Thank you so much for this information!!!!!!

Gemini Experienced
Gemini
Posted

Glad to help, Kiki.  I hope your doctor isn't offended because sometimes they get in a huff when someone points out mistakes with testing but I get totally annoyed when they play the blame game and haven't looked at the whole picture.  When re-testing in the beginning, it is important to do a full celiac panel....at least for awhile until things are good.  Whenever the tTg comes back elevated, though, a DGP needs to be done also.

 

BTW....the only things I screen as far as products go are all lip stuff, for obvious reasons, and hand cream.  I wear make-up but am careful and do not eat it.  I have the blood work to prove it too. That may not be an issue for everyone......it depends on a person's grooming habits.

 

Let us know what happens!  :)

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