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My Daughters Tests


JustMe75

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JustMe75 Enthusiast

We just got back from vacation last night and my 14 yr old daughters dr had left a message regarding her blood test results. A week ago I asked him to do the celiac panel on her to see if that is whats causing her stomach pain, constipation and a few other symptoms. He did and said he was going to do the "childhood allergy panel" as well.

Well he said her celiac tests were negative but she tested positive for dairy allergy. He said no more milk, ice cream, cheese.... FOREVER. I didn't know they could do blood tests that tell you which foods you are allergic to. If that is possible why don't they do it more instead of the elimination diet? I am still not sure if she isn't reacting to gluten, I will probably have her try no dairy alone for a few weeks and see how she does and maybe remove gluten too.

I was just starting to get the hang of my gluten-free diet and now I have to figure out how to cook gluten-free for me dairy free for her and feed the other 5 family members of our family who are refusing to give up their old favorite meals. I have been trying to make as many naturally gluten-free meals but many of them have dairy. Wow this is gonna be complicated!

Oh, one more question off this topic....

My youngest daughter (11) has a rash on her neck that has been there for about 6-8 months that looks like a million little pimples, some flesh color, some white heads, some red. She said they itch terrible but not all the time. She told me last week they start itching after she eats. After she has been itching it then it burns and hurts to touch it. I took her to the doctor about a month ago and he said the usual... did I change laundry soap things, which I didn't . Its only on the front of her neck and chest and sholders but mostly on her neck. Could this be DH? Would it itch all the time? It kinda reminds me of a shaving rash if that helps you picture it. I think I will have him run the allergy panel on her to see if its a food allergy too. (maybe she will be allergic to something else and my whole family will be allergic to different things! Wont that be fun :huh:

Hope someone out there has some answers to my questions and some words of cooking encouragement for me!


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Emily Elizabeth Enthusiast

I feel sorry for myself sometimes having to cook gluten free, but I can't imagine trying to cook for a family of 5 and having to worry about gluten and dairy and all the cross contamination issues on top of that. I have a cook book that is made for people with Gluten, Dairy, Eggs and Sugar allergies called Cooking Free by Carol Fenster, PhD. She has some really good recipes to choose from. I wish you luck with your new cooking adventure!

Hope someone out there has some answers to my questions and some words of cooking encouragement for me!
JustMe75 Enthusiast

Thank you! I feel very alone in this sometimes. I look around in restaurants and think... like 1 in 100 have this, someone here must be going through this too. I wish I could just spot them in public. We all need a big gluten-free on our foreheads! :D

I will look for that cook book. I'm sure this will get easier.

nora-n Rookie

My daughter is very reactive to gluten and dairy and only had positive tests for dairy. I have only negative tests but react very much. we are gluten-free and dairy-free.

the test for DH is a skin bipospy of healthy skin next to the rash. The IgA in the rash is used up so one cannot biopsy the rash. It is well known that those with DH sometimes do not show the villi damage nor the blood tests for celiac, but the diagnosis is clearly celiac.

nora

elye Community Regular

This is a very interesting thread for me, and very timely. My husband has always had terrible gas and at times bloating. His mother is the same, with iron and thyroid issues. His brother was just diagnosed last week with celiac, so now I am absolutely certain that he has it, as well. We are currently waiting for the test kit from Enterolab. He has had negative blood and biopsy results, which we know can mean nothing. However, he tested positive for lactose intolerance. A situation like yours, Justme...now, what has confused me is that this GI told us that not adhering to a dairy-free diet is "okay" with lactose intolerance--no lymphomas or cancers, unlike gluten intolerance. I don't quite understand that one. Anyways, I'll be likely sharing your very limited cooking choices after my DH does the stool test... :(

JustMe75 Enthusiast
This is a very interesting thread for me, and very timely. My husband has always had terrible gas and at times bloating. His mother is the same, with iron and thyroid issues. His brother was just diagnosed last week with celiac, so now I am absolutely certain that he has it, as well. We are currently waiting for the test kit from Enterolab. He has had negative blood and biopsy results, which we know can mean nothing. However, he tested positive for lactose intolerance. A situation like yours, Justme...now, what has confused me is that this GI told us that not adhering to a dairy-free diet is "okay" with lactose intolerance--no lymphomas or cancers, unlike gluten intolerance. I don't quite understand that one. Anyways, I'll be likely sharing your very limited cooking choices after my DH does the stool test... :(

I haven't talked to her doctor yet, but he did say on the message no more, forever. I don't know if thats because if it makes her sick she obviously shouldn't have it or if it will actually do damage to her if she does. She asked me if she will be allowed to "cheat" sometimes and I told her I wasn't sure yet. If it's not going to do long term damage and only cause a stomach ache, I think she is old enough to decide if she wants to deal with that.

From what I have read so far, a dairy allergy is an immune system response to an allergic substance and lactose intolerance is a problem digesting and breaking down the lactic acid in milk. I have also read that some people with celiac have a temporary lactose intolerance because the villia are damaged and the tips of the villia are what digests or helps digest lactose. So when they are healed they can sometimes also be cured of the lactose intolerance. If my daughter has an "allergy" to dairy and it is an immune system response I would think it would be doing some damage to her body. This is all so new to me by brain feels like it is spinning sometimes.

I had come to the conclusion that since my tests were negative and I don't have any real health problems other than my gluten responses (headache, tired, D, depression) I probably had a gluten intollerance or gluten allergy and not celiac. And now that my daughters were negative and she has a dairy allergy maybe we are just an allergic family and not a celiac family. I am going to test my youngest daughter still and see what that shows. As far as the limited cooking choices I am thinking about going Gluten-free Casein-free and just cooking things for her and I and possibly the youngest and "normal" food for the rest of the family. As often as I can I will cook things that we can all eat, or at least things that we can choose from the side dishes as individually necessary. I want to take a gluten free cooking class! Good luck to you! :)

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
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    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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