Disappointed

[GwenO]

So my daughter is fourteen.  She was diagnosed with celiac at eleven.  She was very sick, hospitalized etc.  I'm not sure if they count TTG numbers differently in different places, but at that time her numbers were "greater than 400".  We've worked hard.  We are not a gluten free home, however, we are very careful - she has all of her own kitchen stuff, toaster, counter, utensil, pots etc.  She also suffers from OCD and eats the same things all the time with very little variation.  She seldom, if ever, eats out.  Her numbers have gone down consistently since her diagnosis.  As of August last year, she was at 45, so we were pretty pleased.  We've just had her tested again and it came back at 90!  The lab stated "the increase in number consistent with the patient ingesting gluten". 

 

I'm really upset about this.  The ONLY thing I can think of that's changed is that since she started high school in September, she likes to go to Starbucks once a week or so with her friends.  Usually a chai tea latte - we have checked that the mix is gluten free.  So my question: could she be getting enough cross contamination to spike her numbers, or should I be looking elsewhere?  I so hate to take this away from her.  It's a real pleasure for her and she's worked so hard.

 

I'd appreciate any input.

[StephanieL]

Are the labs done at the same place? 

 

Have you had her thyroid tested?

 

If those answers are yes, I would perhaps consider a gluten-free house over taking away Starbucks.  She could get a prebottled drink when she went.

[GF-Cheetah Cub]

I am so sorry to hear that!   We too struggle to bring our TTG number down.   My daughter has been on strict gluten-free diet for over a year, and finally our TTG is 70.   Which is a big improvement for us.

 

My daughter has no symptoms, so I often don't know where the contamination might come from.   I bought this gluten test kit, and we totally love it.   I test her favorite foods that we are not sure about.  

 

Maybe you can buy test kits, and test the drink and see.  

 

The test procedure is pretty easy, and we found it be accurate.

 

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[cyclinglady]

I can not offer advice about Starbucks. Comments on this forum from baristas about cc issues have steered me to plain old coffee.

I will comment about a shared household.

My husband went gluten-free per the poor advice of my allergist and his GP. We knew nothing about celiac disease and testing. He felt so much better, but he got glutened still. Mostly from eating out, and sometimes from me. I cooked gluten-free dinners, was careful about cross contamination or so I thought. Since I had nut, garlic, egg, and milk allergies, I was confident that I knew the drill.

Once I was diagnosed two years ago, I became the gluten police. It was banned. My daughter, who is 14 too, can only eat noodles that I prepare occasionally. I hate doing it because it means separate dishes, etc. Everything else is eaten at school. No Gluten-containing bread or goodies are allowed in my house unless it is prepackaged. We rarely go out to eat and now I am making to-go lunches for my husband when he is out of the house. He has told me that because I am a nut about not going out and policing his food choices In and out of the house, that he finally feels better. He goes months and months without getting glutened. He makes better food choices now and he is old! I can imagine how hard it would be to make those choices at 14!

Is there anyway, you all can go gluten free? It might help? At least it could rule out getting glutened in the house. It might even help with her OCD issues. I know that I NEED to have at least one place where I can let down my guard and ALWAYS FEEL SAFE. Getting glutened makes hubby and me anxious and grumpy -- just ask my daughter. She alawys can tell when we've been glutened!

I sincerely hope this helps. My heart goes out to your daughter.

[GF-Cheetah Cub]

I agree with the other posters...I also thought that your daughter might have gotten contaminated in your own home, rather than at Starbucks.

 

Our home went gluten free since my daughter was diagnosed too.  The gluten-free standard for Celiacs are quite impossible! 

[BlessedMommy]

Yes, I agree with making the house gluten free.

 

I'm the only gluten free eater at home and people here eat mostly gluten free for my sake. If they eat the occasional gluten meal (like pizza brought in from somewhere for example), I pretty much have to put them in baths and clean up the area myself afterward. When my kids were gluten challenging, I got hit with gluten pretty bad. There were just too many crumbs around and too many little gluteny hands.

Gluten is basically a convenience food. My kids eat VERY healthy, so I don't think that mostly skipping the gluten at home has hurt them any.

 

My husband takes leftovers to work, instead of sandwiches. I cook my kids entree style meals at home instead of making them sandwiches. They are homeschooled, so I don't have school lunches to pack, but when I pack snacks to take to homeschool co-op, it's usually stuff like fresh fruit, hard boiled eggs, string cheese, veggies, etc.

I do cooked breakfasts like homemade gluten free waffles, gluten-free oatmeal, eggs, roasted potatoes, etc. and skip the breakfast cereal most of the time. The only breakfast cereal we really use very much is Udi's granola and even then, I only purchase 3 bags a month of that.

[GwenO]

Hmmmm.  Well we have managed to go way down while not having a gluten-free house.  I have an eighteen year old son who continues to eat things like frozen pizzas, noodles etc.   - on a different workspace.  I don't know that I couuld afford it - being completely gluten-free - very difficult.  Just seems odd to me that we go down dramatically for two years and then suddenly get a high number....

[GwenO]

As an add on;  my son has some learning disabilities and is likely to be living at home for awhile yet. 

[kareng]

Is it possible she has some other issue that would elevate the tTg?

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[GwenO]

I hadn't thought of this. I'll call her doctor.  I naturally gravitated towards Starbucks because nothing else have changed at home.   I do the cooking for her and everything is separate like I said. She's very regimented with her foods. i.e. toasted (in her own toaster) gluten-free bagel prepared on a plate on her own counter top with her own cutlery.   Does anybodyknow if that has to be a "bunch" of glutening - to go from 45 to 90 or if this could have been from a single incident?  I'm not too sure. 

[Gemini]

Is it possible she has some other issue that would elevate the tTg?

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Thank you, Kareng!  Looks like I have to do my Celiac 101 class again ........

 

Gwen.......the tTg test is not a test for dietary compliance, the DGP or AGA IgA/IgG are.  The AGA testing is just an older version of the DGP but it is very reliable in it's own right. In order for your daughter to be ingesting gluten and have that be the reason for her spiked tTg, her DGP would also have to be tested and it would have to be positive.  You cannot assume that her spiked tTg is from gluten ingestion without doing both tests together.....all the time.  When I have my antibodies checked, they ALWAYS do the tTg, the DGP and the AGA IgA/IgG together, to get a clear picture of what is going on.  So, if they have only done the tTg, they cannot assume she is ingesting gluten because other autoimmune issues can elevate tTg.  This is an extremely common mistake doctors make and it is inexcusable, as far as I am concerned.  I have other AI diseases which kept my tTg slightly elevated for awhile, until the inflammation in my body went down.  My DGP was in the stellar range 1 year after diagnosis and my numbers at diagnosis were through the roof, like your daughters was.  I would suggest going back, if they have not checked this important test, and make them do so.  Only then will you be able to get a handle on what is causing the spike.

 

As far as Bucky's goes..........I would say let her continue because the Chai Spice Latte is one of my favorite drinks and it is my treat also!  I am very sensitive and I have never gotten sick from one in 10 years gluten free.  Love my Chai's!  Just make sure she tells them she is a Celiac and use proper protocol for allergies.  Starbuck's usually does not hire the less intelligent crowd like some other places do, so I have never had a problem making them understand what I need.  I treat myself about twice a week and my numbers just came back perfect.  I understand no place is infallable but wait until they repeat her DGP to see what that number is before you go crazy thinking your daughter is ingesting gluten.

 

Good luck!

[GwenO]

Wow.  I had no idea about that either.  Just left a message for her doctor, because I don't actually know what bloodwork was done other than the TTG and vitamin D and iron.

[cyclinglady]

Thank you, Kareng! Looks like I have to do my Celiac 101 class again ........

Gwen.......the tTg test is not a test for dietary compliance, the DGP or AGA IgA/IgG are. The AGA testing is just an older version of the DGP but it is very reliable in it's own right. In order for your daughter to be ingesting gluten and have that be the reason for her spiked tTg, her DGP would also have to be tested and it would have to be positive. You cannot assume that her spiked tTg is from gluten ingestion without doing both tests together.....all the time. When I have my antibodies checked, they ALWAYS do the tTg, the DGP and the AGA IgA/IgG together, to get a clear picture of what is going on. So, if they have only done the tTg, they cannot assume she is ingesting gluten because other autoimmune issues can elevate tTg. This is an extremely common mistake doctors make and it is inexcusable, as far as I am concerned. I have other AI diseases which kept my tTg slightly elevated for awhile, until the inflammation in my body went down. My DGP was in the stellar range 1 year after diagnosis and my numbers at diagnosis were through the roof, like your daughters was. I would suggest going back, if they have not checked this important test, and make them do so. Only then will you be able to get a handle on what is causing the spike.

As far as Bucky's goes..........I would say let her continue because the Chai Spice Latte is one of my favorite drinks and it is my treat also! I am very sensitive and I have never gotten sick from one in 10 years gluten free. Love my Chai's! Just make sure she tells them she is a Celiac and use proper protocol for allergies. Starbuck's usually does not hire the less intelligent crowd like some other places do, so I have never had a problem making them understand what I need. I treat myself about twice a week and my numbers just came back perfect. I understand no place is infallable but wait until they repeat her DGP to see what that number is before you go crazy thinking your daughter is ingesting gluten.

Good luck!

Gemini,

I am glad that you can confirm that Starbucks can produce a gluten-free Chai!

When I read your statement about doing a Celiac 101 class, I thought that might be a good idea. I checked out our Newbie 101 section and information about testing for dietary compliance is lacking. I certainly can not keep up with all the latest information in testing and testing for dietary compliance. However, I have been researching and the results are confusing. Leading authorities do not agree on a standard for celiac disease dietary compliance. Some recommend just the TTG (I would avoid this one personally since my TTG was negative when I was diagnosed and I have one other autoimmune issue and others being determined), some recommend both the TTG and the DPG, others recommend just reviewing the diet/consulting with a dietician.

Here are some sources:

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The GI.org link does state, "A persistently positive TTG antibody after GFD was significantly associated with abnormal duodenal histology, low ferritin, and poor adherence to GFD (234)."

The last link does support your case about high TTG levels being linked to other autoimmune disorders. The advice you gave to Gwen is correct. One way to rule out gluten in her daughter's diet is to run the DGP. Still, I wish it were easier and guidelines were consistent!

We talk about getting diagnosed properly and how to live a gluten-free life on this forum, but we do not talk much about testing for dietary compliance which can be critical for kids. Maybe this should be a new thread and then saved/pinned under the Newbie 101 section? Or maybe it is there and I have missed it!

Just some gluten-free food for thought.....

[Gemini]

The chai or espresso based latte's, etc. (hot drinks) are all gluten free as it's just coffee, tea or a milk/milk substitute of some kind.  Little chance of cc there.  It's the blender drinks that would be of concern because not all of them are gluten-free and I don't think they scrub out the blenders in between.  They use a quick jet wash, which isn't good enough.  You would have to be careful to check other ingredients that you have the option of adding to your drink but I just stick with the basic soy chai.  Never had a problem.

 

I think the idea of a category for testing/retesting basics is a good idea because doctors rarely all agree on protocol. This one I scratch my head over, though, as how can you assume non compliance or accidental gluten ingestion from a tTg alone when other AI diseases can produce the same result?  Running the two together (DGP and tTg) will point you in the right direction on which one it might be and avoid a lot of heartache for those with these results. What is it they don't get?    I realize that this whole scenario will not work except for those who had positive blood work but many fall into this category, including me.  Things would certainly be easier if doctors were more willing to run simple blood work and not assume or guess what the problem is.

[nvsmom]

Ditto Gemini.  The tTG can be elevated from hashimoto's, diabetes (Type 1), liver disease, crohn's, colitis, or a serious infection. Get that DGP done too.

 

Good luck.