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DG1

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DG1 Newbie
DG1
Posted

My 8 year old daughter was diagnosed with celiac about 6 months ago. We have read a lot of information on diet and also have seen a dietitian. We are trying very hard to follow a gluten-free diet and it seems that she is feeling much better. The problem is the levels in her blood are still quit high. It was initially 130 and after 3 months on "gluten-free" diet it was 115. Now 6 months after starting this diet it is 99. Our doctor told us it should be below 20 very soon after gluten is removed from the diet. We are having a very hard time trying to figure out where the gluten is coming from. I don't believe she is cheating and I feel we are missing something. We are very frustrated and feel as though we are letting her down as her parents. Any help would be appreciated. Thanks, David and Patti

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Boojca Apprentice
Boojca
Posted

I think you should talk with the doctor, possibly without your daughter there, and see if he/she is concerned that it's not below 20 by now. Is it possible that your daughters body is just healing slowly? If she's feeling well, and the numbers are going down, I would think that is proof enough that you are doing things right and that it's going well. It's scary, for sure, but just be sure that something really is "wrong" and that it's just not "slow". You aren't failing her, no matter what. 6 months is definitley not enough time to be an expert at this, you are all still learning. Start by keeping a food diary of EVERYTHING she eats, and read the labels of those items. Is she getting crumbs from someone else's sandwich? Does she go to a daycare, could she be getting something there even if it's a crumb here or there? Again, you aren't failing her. The companies who for some reason "refuse" to clearly label their products are letting us all down!

I definitely think, though, that the best place to start is a frank conversation with the doctor about whether to be concerned or not.

I hope this helps even just a little.

Bridget

lovegrov Collaborator
lovegrov
Posted

Are you fully aware of cross contamination issues? If you have any doubt, go here to look at things you should consider. Some might sound a little anal, but if her levels aren't going down, it's time to look at everything.

Open Original Shared Link

Do you all eat out a lot? If so, she's getting gluten at restaurants.

The only other way I can think that we could help is if you posted a pretty detailed list of what she eats. Maybe somebody would spot something.

You didn't say which test this is. Some go down more slowly than others, but I would say it definitely should be down more than this, especially in a child (they generally heal faster).

richard

ryebaby0 Enthusiast
ryebaby0
Posted

My son (age 10) was dx 7 months ago and reliably gluten-free (he was in the hospital on tube feeds!) 6 months ago. His orginial number for tTg was 157; in about 7 weeks it was down to 130 and a few weeks ago he re-tested at 35. I think your doctor is just plain wrong about how fast it should happen, but maybe you should post and see if anyone spots anything. Gluten turns up in just the stupid-est places!!

Joanna

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  • Recent Activity

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      - trents replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Hidden Gluten in distilled vinegar

      Take it easy! I was just prompting you for some clarification. In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution...
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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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