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Update On My Little Girl...


Kassidy's mom

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Kassidy's mom Rookie

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!


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mommida Enthusiast

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

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

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:

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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