Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Daughters Tests


JustMe75

Recommended Posts

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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! :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,858
    • Most Online (within 30 mins)
      7,748

    Terin83
    Newest Member
    Terin83
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...