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

Strict Gluten Free Diet And Still Elevated Levels


mommysarah713

Recommended Posts

mommysarah713 Rookie

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

You can give her time and your patience. Those levels take a long time to come down. If they are coming down, you are making progress. They just don't fall to very low right away. Just focus on her diet like you have been and it will be OK in the end. You're such a good mom to care for her in such a dedicated way. She is doing well.

  • 1 month later...
TerryK Newbie

It took almost 2 years of very strict diet for my daughters blood work to be normal. No one told me it could take awhile so I drove my self insane, cooking food in her own pots/pans, not putting any of her dishes in the dishwasher. Everytime her blood work would come back high I would start logging everything she ate. Her numbers were very high to start & I now believe it just took awhile for her body to adjust.

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.

taweavmo3 Enthusiast

It could also be helpful to make a list of the most common things she is eating, and we might be able to tell you if there are any hidden sources of gluten. I know there are plenty of items out there that should be gluten free, but still cause problems.

For my daughter, we have had to cut out alot of processed foods, and go to a more whole foods diet. She's just really sensitive, and little bits of cross contamination add up over time. Frito Lay chips were something we finally had to cut out for example....she does fine with a little every now and then, but not on a regular basis in her lunch like we were doing. So, that might be something to look into if her numbers continue to remain high. Hope that helps, keep doing what you are doing, and you will figure it out!

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

      Severe severe mouth pain

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

      Severe severe mouth pain

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

      Severe severe mouth pain

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

      Severe severe mouth pain

    5. - Charlie1946 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):
  • Upcoming Events

  • Posts

    • 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.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
×
×
  • 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.