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

Update On My Little Girl...

Kassidy's mom

Recommended Posts

Kassidy's mom Rookie
Kassidy's mom
Posted

First of all, I want to personally thank all of you who responded to my Quaker Oats question a few weeks ago....I haven't had the chance to say thank you yet!!

Background: Kassidy was Dx with Celiac the end of Ocotber via biopsy and elevated levels. At that time, her TTG was over 100 and her hemoglobin was 8.4

We became gluten that very afternoon and giving her liquid iron supplements twice a day. But...we were unknowingly giving her gluten every morning-hence the Quaker Oats dillemma.

About 4 weeks ago, we did bloodwork just to check on her and her TTG was 15, hemoglobin 8.5. That prompted me to axe the oats and I also began giving her a 1/2 teaspoon of "Black Strap Molasses" (the tip was given to me by a gentleman who founded his own nutritional supplement company) twice a day along with the liquid iron.

On Monday, we did more bloodwork and got the results today-her TTG is 4 and her hemoglobin is 11.6!!! Yay!

Apparently she is still considered "iron deficient" as her red blood cells were a little small under the scope, but she is no longer anemic....YES!

We will have another check in 3 months where they anticipate her TTG to be even lower (they don't think her intestine has fully recovered)

Anyway...I just thought our story would provide "light at the end of the tunnel" for some of you who are in the earlier stages of Dx.

This has all transpired in 3 1/2 months. My daughter was 2 weeks shy of her 2nd birthday when she was disgnosed.

Oh, ya...I forgot to mention she has gone from 24 lbs to 29 lbs since being gluten free and has grown a couple inches too-amazing! :)

And most importantly...she is so energetic and happy; enjoying life finally!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I am so happy every thing is working out.

There is a recent post, Healing takes time, that you might be interested in checking out. As good as things are going right now, 2 years gluten free is probably going to be even better!

Laura

taweavmo3 Enthusiast
taweavmo3
Posted

That's great news! We are coming up on our one year anniversary of putting my daughter on the diet (I feel like throwing a party) and the changes are still coming. Her personality is really blossoming lately, and she keeps growing, and growing. Just when I think she can't change any more, she does.

You will be amazed at what the next few months will bring, it's amazing.

penguin Community Regular
penguin
Posted

My family is full of old indian folk remedies, that we still use to this day,

my grandfather swears by sorghum molasses as a cure all for everything, and if you can find it near you (it's hard to find outside of the south) you might want to give her some of that. It's also way yummier than blackstrap!

Here's an article about it:

Open Original Shared Link

:lol:

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

      Severe severe mouth pain

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

      Severe severe mouth pain

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

      Severe severe mouth pain

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

      Severe severe mouth pain

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

      Severe severe mouth pain

      @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...
  • 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

    • Aretaeus Cappadocia
      Finding gluten free ingredients

      By Aretaeus Cappadocia · Posted

      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
      Severe severe mouth pain

      By knitty kitty · Posted

      @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
      Severe severe mouth pain

      By cristiana · Posted

      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
      Severe severe mouth pain

      By trents · Posted

      @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
      Severe severe mouth pain

      By Charlie1946 · Posted

      @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??
×
×
  • 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.