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James Definately Has Celiac


mommy2james

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mommy2james Newbie

Well he had his biopsy and he is definatelyCeliac.My other two have showed negative with blood work.

I have 1 week to get itall together and learn how to make this a gluten free family.I have no idea where to begin.Do I need new pot's and pan's??A microwave,silverwear,cup's,plates ect,ect ect,I have no idea.....

I would love for 1 person to be my guide and tell me step by step what I should do and what I need to get the ball moving.

Any taker's :D

Marie


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FreyaUSA Contributor

I don't know if there is a support group in your area, but I found out recently that there is one in mine. If I'd known 7 months ago, I would have contacted them in a heartbeat! There might be someone close to you who has gone through this who would be more than glad to help you. There is a section here about support groups, you could ask there. Good luck! :)

darlindeb25 Collaborator
:D marie--you can email me with questions if you want--you dont need to buy all new pants, but teflon should not be used for a celiac if it has been used otherwise--otay--you dont need to buy new dishes--just wash them very well--be very careful--some people say they fix the celiacs food first and then the others and clean the cupboards very good--u dont need to change the microwave and beleive me, it will become 2nd nature--my email addy is attached--feel free--deb ;)
tarnalberry Community Regular

Give yourself more than a week, though start the process now. It's a learning process, and you'll need time for it. Stick with the basics - no processed foods, just natural whole foods (they taste just fine and are healthy!). As for hardware - non non-stick pots and pans and other materials that won't absorb things don't need to be replaced, but I would replace plastic collanders (strainers) and wooden spoons. (And tupperware items that have pitted over time.)

Boojca Apprentice

My son, 3, was diagnosed in June and I know exactly where you are. First, and most importantly, know that in just about a month you'll feel like an old pro!

Second, admit now that you will make mistakes. It's not a big deal. It's just like any other "diet", you realize you made a mistake and just get right back on track.

How old is your son?

Feel free to email me if you need to. I will try very hard to get back to you ASAP.

Bridget

lovegrov Collaborator

Go to this web site

Open Original Shared Link

and then scroll down for some helpful files.

richard

mommy2james Newbie

Thanks everyone!! I am just now trying to buy up some of the things I will need to start off..My problem is what about lunches for school?? I am just so lost right now but am sure in time I will be ok with all this.I am changing the whole family so I know it will be hard but think it would be easier on James too.He is 8 and finds all this very unsettling..

Marie


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      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
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