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

My Daughter Is Now Much More Symptomatic After 2 Years On The gluten-free Diet And Its Breaking My Heart


Guest AutumnE

Recommended Posts

Guest AutumnE

I had severe symptoms and gluten-free was my answer, my daughter and husband went on it by default and a little rash she used to get here and there went away unless she was accidentally glutened.

2 years on the diet leaves a horrible reaction for her now. Explosive diarrhea, stomach cramps for days and a rash completely covering her butt area.

It is really making me question what I did. I know in my head that Im hopefully saving her from all the autoimmune diseases I have by starting at an early age but it breaks my heart that when she gets cc by being at gluten filled homes. I bring all of her food, all of her silverware and paper towels and drinks but once in a while she still gets glutened. I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :( The mommy guilt I am feeling is horrid......


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



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I had severe symptoms and gluten-free was my answer, my daughter and husband went on it by default and a little rash she used to get here and there went away unless she was accidentally glutened.

2 years on the diet leaves a horrible reaction for her now. Explosive diarrhea, stomach cramps for days and a rash completely covering her butt area.

It is really making me question what I did. I know in my head that Im hopefully saving her from all the autoimmune diseases I have by starting at an early age but it breaks my heart that when she gets cc by being at gluten filled homes. I bring all of her food, all of her silverware and paper towels and drinks but once in a while she still gets glutened. I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :( The mommy guilt I am feeling is horrid......

There is nothing quite like a mother's guilt trip, is there? :wub:

Anyway, you have done the right thing by taking her off gluten. How do I know? Because if her body did not have a problem with it, there would be no reaction at all whenever she ate it. The fact that she has a reaction just proves the wisdom of what you did two years ago.

Guest AutumnE

Thank you

I know in my head I did the right thing now if I can just wrap my heart around it. I cry with her when she has her accidents that embarass her so badly. I never hated celiac disease/gluten intolerance before with me but I do now that it hurts my baby :angry:

amylouise Rookie

hey i had the same problem - my original symptoms were just oesophagus swelling and acid reflux but now when i get glutened i have sooo many more syptoms like constipation, fatigue, nausea, headaches, runny nose etc as well as the original symptoms! i think you did the right thing taking your girl off gluten! xxx

taweavmo3 Enthusiast

The severe reaction shows that you most definately did the right thing. My daughter never had the classic GI symptoms before diagnosis, but she was very malnourished. Now, she does get very ill.....vomiting, diarrhea, high fevers and lethargic for weeks. She is absolutely miserable, but these bad reactions have also helped her realize how important it is to stay away from gluten. It is hard to watch her suffer, but I know I won't really have to worry about her straying from the diet when she is older. So, it does have a positive side.

I would of course rather my child be 100% healthy and not have any issues, but in all honesty...if I could hand pick a disease for my child to have, it would be Celiac. It's totally controlled by diet, usually leads to a healthier lifestyle for the whole family, and if caught early on, it can actually ward off a slew of adult problems. So all in all, after you get past the difficult beginning stages, it really can be a blessing.

Don't feel guilty...you absolutely did the best thing for your child!!!!!!!!!

Jestgar Rising Star
I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :(

You don't know this. She may have become this sensitive no matter what. What you absolutely DID do was save her two years of damage and misery.

Juliet Newbie

"She may have become this sensitive no matter what. What you absolutely DID do was save her two years of damage and misery."

Couldn't have said this better myself! You have no reason to feel guilty, even IF her "visible" symptoms would have been less had you not taken her off of gluten. It's the "invisible" damage that's worse. No matter what she may be going through now, she is far better off and lucky to have a mother like you.


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



Celiac.com Sponsor (A8-M):



Guest AutumnE

Thank you :)

I do feel better now, at the time I posted she had just finished having diarrhea from it along with a rash so it was hitting me hard. Thankfully we have a lot of family support since my mom, sister and my sister's kids have it also so it makes holiday dinners easier for our family and she feels normal since many of her cousins cant eat it either.

Archived

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

  • 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. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    2. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    3. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,901
    • Most Online (within 30 mins)
      7,748

    kharvey
    Newest Member
    kharvey
    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

    • Aretaeus Cappadocia
      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
    • Aretaeus Cappadocia
      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
×
×
  • 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.