Jump to content

  • 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

I Hope This Is Just An Odd Coincidence...

rgeelan

Recommended Posts

rgeelan Apprentice
rgeelan
Posted

Emma, our 2 year old, has had allergies her whole life. As a baby she had severe MSPI (dairy and soy allergy) and I went dairy and soy free for a year because she wouldn't take a bottle. Well her symptoms that clued us in on that was diarrhea with mucus and blood in it. We reintroduced dairy at 13 months and she has had ups and downs but always bounced back fairly quick. At about 21 months she started having lots of diarrhea again. I dont' even know if you could go as far as to call it diarrhea or just pretty much liquid poop when it happens. I know it's not from fruit or juice because I have learned what over abundance of that does in the past and always make sure to balance her out. Well a few days ago I decided to test out Gluten since William (our 4 year old) has celiac disease and his first symptom was diarrhea all the time. So yesterday I went to change Emma's diaper and her poop is firming up now. I figured it had to be either Dairy or Gluten with her. The thing is that she didn't have as much milk the day before as she normally does so I am not 100% sure if it is because she had been totally gluten-free for over 36 hours at the time, or if it was because her milk intake was cut back. So yesterday I loaded her with milk to drink and am waiting to see what happens today. I figure I should give it a few days and see how things react and if the gluten-free seems to cure things I am going to have her doctors run the Celiac tests again (and possibly allergy test at the same time to make sure it isn't just an allergy).

At the same time I have been doing this though we put our baby, Sarah, on Nutramagin because she seemed to be reacting to both Dairy and Wheat when I would eat them. Yesterday she was a different baby, after just 24 hours on Nutramagin we saw a change. We are going to continue to make sure she doesn't have to go a step further to specialized formula with absolutly no dairy, but we can already see the improvement in her. The peds won't allergy test because of her age and how inconclusive it is at this young of an age. But taking out Dairy and Gluten made a difference for her so far also.

What would the odds be of all 3 of our children reacting to Gluten but my DH and I don't!!! I am hoping this doesn't mean that all 3 of them will have Celiac Disease. It is so hard on our son being 'different' but at least he was old enough when he was diagnosed to understand what was making him sick. I dont even know how I would begin to explain it to Emma yet.

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

Celiac.com Sponsor (A8-M):


lbsteenwyk Explorer
lbsteenwyk
Posted

Have you and your husband been tested yet? One or both of you may have celiac disease and simply be asymptomatic. Children typically have much more obvious symptoms than adults. It is now thought that the majority of adults with celiac disease have an "atypical" presentation with few symptoms, or "silent" celiac disease with no symptoms.

I think it is actually easier on children who are diagnosed earlier. My daughter began the gluten free diet at 26 months. I really didn't explain it to her until she was 2 1/2 and then only in very simple terms; at this age they accept what you tell them as the truth. If you say, you can't eat gluten because it makes you sick, they will believe you and the gluten free diet will just be a way of life for them. At least that's they way it was for my daughter. She never questions why she can't have gluten and just accepts that she can't have it. If she was just being dx now, we'd be having a much harder time!

Guest nini
Guest nini
Posted

celiac disease is genetic so the odds are high that all of your kids have it... and that either you or your hubby have it and just don't have any symptoms that are typically associated with celiac.

rgeelan Apprentice
rgeelan
Posted
  • Author

I have quite a few of the 'common misdiagnosis' but when I had myself tested it was negative. My DH has no symptoms so he refuses to be tested. I realize that one of us at least carries the gene but we don't really know who...

I guess it's all denial for me at this point. I should have seen the signs earlier and challenged Emma's diet. But I didn't want to think that 2 of my kids could have Celiac when it is hard enough for the 1 already diagnosed. Part of me is still hoping it comes back as just an allergy but I know how much that Gluten challenge really means and her responding so quickly and positivly to it really makes me suspect she will be diagnosed with Celiac also.

Thanks for listening. I will update when we find out what the tests say...

Guest nini
Guest nini
Posted

Do you know what blood tests they ran on you? There is a specific panel that is recommended and if not all of the tests were run then the results could be a false negative (just a thought)

Also, keep in mind that you can have false negative results in children just as easily too. In fact, tests in very young children are extremely inaccurate, and if the Dr. wants to do a biopsy to look for damage (assuming that there is enough damage to find yet) it can only confirm Celiac but can't rule it out.

The gluten-free lifestyle really isn't (or doesn't have to be) that hard on the children or the rest of the family for that matter. And the more people in your family that are gluten free, the easier it is. You don't have to spend a lot of money on specialty gluten-free foods. I'm just full of ideas, so if your interested in some... feel free to e-mail me at nisla@comcast.net

  • 3 weeks later...
Indea88 Newbie
Indea88
Posted

Our pediatric GI Dr. has Celiac himself and he told us that if you have Celiac ,your lactose intolerant? So they go hand in hand...I know others use milk products, but we dont based on his advise.I just use Pacific rice milk,its gluten free

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748
    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.