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Celiac, Type 1 Diabetes, Hypothyroidism (non Hashimoto), and Downs Syndrome
April 23, 2012
5:45 pm
Cristina Leivas

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July 12, 2011
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Hello,

I have a daughter who was diagnosed through endoscopic with Celiac but the diagnosis wasn't black and white. Still questionable by gastro doctor. About 7 month prior to being diagnosed, was diagnosed with Type 1 Diabetes. My daughter is 20 and Downs with hypothyroidism. We've been on a gluten free diet for over 1 year to no prevail. We stayed away from the GF flours like sorghum, buckwheat, and corn, but have used tapioca, almond, coconut and brown rice flour. Usually always organic. 99.9% of the time the food she eats is homemade. About 2 weeks ago we went to Scottsdale, Arizona and ate at Picasso's and also the gluten free bakery. I did noticed they used sorghum and other flowers we normally do not use, but thought it was a safe place to eat. Additionally, my daughter took allergy tests that came back she was allergic to the mentioned flours, along with potato, corn, and eggs.

Now we have her on the gaps diet in hope we can get her healed, but my question is this. Do other allergies come up all of a sudden, due to the lack of healing? We are at a lost as her doctors are, because her only signs of being sick are EDEMA AND LOW ALBUMIN, but nothing else. Or I should say that's all the physical signs and she doesn't complain about pain or anything else which can be a problem.

I need to know what you would do from my standpoint. What would be the first thing you do or cut out? She is taking GI Restore vitamins, Probiotics, GI Restore powder with Glutamate, vitamin C, and B12 shots. All these with no allergens. Our gastro is wanting to give her immunosuppresant drugs, because he thinks it may be refractory celiac, but I'm against that. Any suggestions would be helpful!!

 
April 24, 2012
4:33 pm
Gluten Free Society
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She needs to have testing to determine the presence of intestinal infection. She should have her nutritional levels evaluated (recommned a Spectracell test). Recommend an iodine loading test as well. She should be completely off of dairy, grains (no rice, corn, sorghum, etc), legumes, and sugars – no exceptions. Minimum 6 months for a positive response on other labs.

Get back with me once these things have been done and let me know how she responds.
All the best,
Dr. O

 
May 7, 2012
6:52 pm
Cristina Leivas

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July 12, 2011
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Dr. O…..thank you for your response. When you say no sugar….are you referring to actuals sugars or also fruit? Is stevia and xylitol ok?

 
May 8, 2012
4:48 pm
Cristina Leivas

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July 12, 2011
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Additionally, my daughter's prealbumin is down to 11. We will have to have her admitted to hospital and they will probably put her on TPN. I guess it's good that the nutrients are bypassing the gut/intestines, but should we completely take her off food during this time to allow it to heal? Her c-reactive protein test came back high 3.2 (should be less than 2.4) and I think with all the inflammation in her body, she's not absorbing much and this can be the reason why her pre-albumin is low. We have her on grain free, gluten free, egg free, dairy free, soy free, corn free, very little fruit, and stevia or xylitol and still to no prevail. We also added enzymes and l-glutamine this last week. I was hoping to see her albumin come up, but hasn't been the case. Where do I go from here????

 
May 8, 2012
4:54 pm
Cristina Leivas

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Forum Posts: 10
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July 12, 2011
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Hope this isn;t a duplicate post.

Additionally, her pre-albumin today came back at 11. Not good….we will be admitting her. Gastro dr performing an endoscopy tomorrow morning then probably put her on TPN. She is gluten free, grain free, legume free, egg free, dairy free, sugar free, soy free, corn free (except probably her thyroid medicine and maybe lasix), minimal fruit except plenty of berries.

Just started her on l-glutamine 6 grams a day broken down 1/2 morning and 1/2 early evening. Give her sole (salt water made out of himalayan salt) to get her ph balance to normal range.

Now what else can I do? I guess overriding her gut is good but putting her on TPN maybe give it a break so she can absorb. Any other thoughts you may have?
Cry

 
May 9, 2012
8:20 am
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No sugar. Is the TPN a corn base of dextrose? I would investigate this immediately.

 
May 9, 2012
10:12 am
Cristina Leivas

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Forum Posts: 10
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July 12, 2011
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I believe it is, but it's being delivered through the blood stream not the gut….does that still matter?

 
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