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Low-level Allergy To Milk

ABQturkey

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ABQturkey Rookie
ABQturkey
Posted

I'm going to post this in more than one forum because I need as many answers as I can get. My 6yo daughter was diagnosed w/celiac in mid-July and we've been doing the gluten-free thing since then. Her behavior has gotten worse since then and she still has stomach-aches, so the doctor ran an allergy panel and the only thing that came back elevated was milk. It was a low-level reading (0.63H - low level is between 0.35-0.70). Her regular pediatrician is out on medical leave so I was left with many questions. She's been drinking Lactaid and taking the Lactaid pills before she eats cheese and such. Are we supposed to stop all milk - even Lactaid milk? Does this encompass all dairy foods or just milk? I'm not sure what we should be avoiding and what's ok at this level. Please help!

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Lisa Mentor
Lisa
Posted

Welcome,

I would revisit her gluten free diet. Have you checked your used toaster, wooden cutting boards and spoons, lotions, shampoo, meds, vitamins or any contact she may have with her mouth.

Contamination at school is very difficult to avoid, with personal contact with food and other children. Are her school supplies safe. Play Doh is not. Have you met with her teachers and discussed her diet?

It's so difficult with children, especially when they are out of our watchful eyes during the day.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I don't know about the allergy testing, but if your daughter is allergic to casein (milk protein) instead of lactose (milk sugar) you should eliminate all dairy products from her diet... milk, cheese, and whey are the big ones. Taking Lactaid doesn't help. Anything marked Kosher "pareve" is fine as long as it's also gluten-free. I'm leery of cheese substitutes (soy, rice) because I'm kind of a cheese snob :P (I grew up in Wisconsin), but soy milk and almond milk are good on cereal. Soy yogurt is good too. Rice milk... except for Rice Dream... is also fine, but I don't like the taste as much.

ShayFL Enthusiast
ShayFL
Posted

butter is out too.

Darn210 Enthusiast
Darn210
Posted

That is really low (Class 1) It's lower than what my son's was and we were told we didn't have to do anything. However, I'm not your doctor so you should check with them. In the meantime, here is a website that gives a little more info so you can see just how low it is . . .

Open Original Shared Link

My son was a Class 2 and the nurse said sometimes what they want (for the low level allergies) is for any type of "milk" ingredient to be at least third or fourth on the list of a product . . . but like I've said, our doc gave us no restrictions.

Also, like Momma Goose said . . . I'd take another look around for inadvertant gluten consumption.

Juliebove Rising Star
Juliebove
Posted

Lactaid won't eliminate the casein and that's what she's allergic to. Yes, eliminate it. Be sure to watch for things like canned soups, margarine, canned icing, etc. Lots of things contain dairy.

swalker Newbie
swalker
Posted
I'm going to post this in more than one forum because I need as many answers as I can get. My 6yo daughter was diagnosed w/celiac in mid-July and we've been doing the gluten-free thing since then. Her behavior has gotten worse since then and she still has stomach-aches, so the doctor ran an allergy panel and the only thing that came back elevated was milk. It was a low-level reading (0.63H - low level is between 0.35-0.70). Her regular pediatrician is out on medical leave so I was left with many questions. She's been drinking Lactaid and taking the Lactaid pills before she eats cheese and such. Are we supposed to stop all milk - even Lactaid milk? Does this encompass all dairy foods or just milk? I'm not sure what we should be avoiding and what's ok at this level. Please help!

I would do a two week elimination on all milk products to see if it helps. Milk products are the catalyst to really bad behavour in our family. We prefer homemade almond milk as a replacement and we make a vegan cheese with cashews and nutritional yeast that is extremely yummy. Is she getting enough fiber. Store bought gluten free stuff and mixes are all practically fiberless. Adding veggies and ground flax seeds to muffins is a nice and tasty fiber boost. I add ground gluten free oats to all of my baking, peanut butter oatmeal cookies are especially popular. Organic coconut oil works especially well as a butter replacement and is a very healthy addition to a celiac's diet because of the higher risk of thyroid issues.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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