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Things Are Getting Better


sugarsue

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sugarsue Enthusiast

A big thank you to those who have posted food advice for us. You have proven to be an invaluable resource. Things are starting to turn around at our house. My daughter is now asking for rice with butter, rice noodles, eggs, asparagus.... She's planning her lunches with fruit and nuts (and plenty of Lays potato chips).

She loves the Bell and Evans chicken nuggets. She's learning to like the Larabars. And she's eating, eating, eating. She can't get enough and she's not crying for her old food.

There's still so much for her to learn to like, but I can really see it opening up for her.

I posted her test results here. If you have any thoughts, I'd love to hear them. I am still waiting to hear what her doctor will think and what our next steps are. It's obvious she is responding to the diet. I am interested in getting further testing done. Any thoughts about Enterolabs and their genetic and stool testing?

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Susan

Mom to almost 6 yr old, really totally gluten free for 1 week


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CeliacMom2008 Enthusiast

How wonderful! The eating thing amazed me - the quantity. I always thought my son was a big eater. Then we went gluten free - OH MY! I would pack his lunch box jammed full! And my mom would take him lunch twice a week to give her extra big meals. They don't get very long for lunch and she would come home laughing about how the other kids talk and carry on and he just eats, eats, eats! It tapered off after a month or so. But in that time he also grew like a weed! I think they call it catch up growth. It's awesome to experience because you know they finally feel good and are finally getting the nutrition their little bodies so need!

Good luck with the lifestyle. Keep it creative, keep it fun, keep it positive and you'll all be great!!

dandelionmom Enthusiast

Wonderful! And the eating like crazy thing tapers off eventually! :)

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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