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gemini1962

Member Since 10 Jul 2012
Offline Last Active Jan 18 2013 02:21 PM
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Posts I've Made

In Topic: Diagnosed 6 Months Ago Still Having Problems

16 January 2013 - 12:02 PM

This might have already been mentioned, but make sure you get copies of all of your test results. It's nice to have them so you can compare numbers post diagnosis. It's also nice to be able to see exactly where your numbers fall within the range of "normal." Sometimes what the lab says is normal, isn't actually normal for you. A good example of this is the TSH test for thyroid: many people experience symptoms of hypothyroidism after their numbers hit 3.00+, but many labs consider numbers up till 5.00 to be normal.

Maybe you could get copies of the reports from the endoscopy/colonoscopy? If you have any questions you could post the results here: there are many knowledgeable people around this forum who can help decipher the medical jargon. :-) Did your doctor test for vitamin deficiencies? Digestive enzymes and probiotics also helped me A LOT. Make sure your probiotics have more than just 1-3 strands of good bacteria! Culturelle makes a GFDF version that helped me also.

Good luck and hugs!

Edited to add: Many of us need to go dairy free for a little while (typically 9-12 months) to aid in our healing because Celiac can cause a secondary lactose intolerance from the damage to the villi (the tips produce lactase, which is what helps us digest lactose). Also, have you been avoiding oats...even gluten-free oats?


Thanks for the good information, I do get copies of my lab reports on my thyroid. I bounce back and fourth every 3 to 6 months. I had half of my thyroid removed years ago and have never been regulated. I may have had celiac for years and did not know until recently. Maybe once I get the celiac under control the issues of absorption will help with my medications absorpting properly. My Iron was low and it is now normal I will have to see if they checked other vitamins. I recently started taking a probiotic will have to look into digestive enzymes. I am avoiding all oats as well.

Thank you for your suggestions and especially the hugs!!!

In Topic: Diagnosed 6 Months Ago Still Having Problems

15 January 2013 - 02:21 PM

Thank you all for the information and the various sites with information. I have an appointment on the 23rd of this month to see the doctor. Does anyone have any suggestions as to questions I should ask the doctor since I am still having diarrhea 5 to 6 times a day? I am also getting my throid levels tested since I am really loosing my hair again and not sure if it is my thryoid or celiacs??? The longest my thyroid has been regulated is 6 months which now makes sense having celiacs with absorption.

In Topic: Diagnosed 6 Months Ago Still Having Problems

20 December 2012 - 10:10 AM

just want to give you a little sympathy! i am newly diagnosed as well, but doing pretty well. i would encourage you to take enzymes to help you through this. diarrhea depletes the good bacteria in your gut and anyone can have trouble after that. i've been taking 2 lactase enzymes once a day (Schiff, Digestive Advantage Lactose Defense Formula, which is probiotics http://www.drugstore...=goobase_filler) Therapy and i also take 1 Enzymedica Digest, http://www.enzymedic...ts/Digest_Basic (a complete Enzyme formula) every time i eat. There are 3 levels of strength on those Digestive enzymes - i initially bought the Digest Gold because it was recommended on the Newbie 101 post, but they were too strong and totally upset my stomach. I went back and got the medium strength one called "Digest" there is also "Digest basic" which is the least strong.

Although newly diagnosed, i'm certain i've had this for 40+ years, just didn't know what the problem was. I've taken the lactase enzymes and the digestive enzymes for probably 15 years and they have made it possible for me to eat. literally. Life before them was eat and run to the bathroom. I'm sure you know what i mean. it's absolutely no fun.

it won't hurt you and it might just help. I hope it will. i'd also go to a very bland diet - bananas, rice - that kind of thing - until your gut calms down.


Thank you for the information, I just started taking a probiotic and immodium and the nutritionist gave me some samples of NutriSource which is a fiber supplement. I am seeing some improvement for the first couple bm's in the morning after that it is all down hill from there. I am going to try the Enzymedica to see if this helps as well. I am also doing a bland diet, just so hard to do when you are so exhausted.

In Topic: Diagnosed 6 Months Ago Still Having Problems

20 December 2012 - 09:45 AM

Ditto Karen. Unfortunately it sounds like something else is happening, and since autoimmune diseases often run in groups, another AI could be the cause. :( I hope you get it figured out soon.


They did test for Chrons and Colitis and both were negative. When you say another AI could be the cause, what does the AI stand for?

In Topic: Diagnosed 6 Months Ago Still Having Problems

10 December 2012 - 12:52 PM

Hmmmm....are you sure you are strictly gluten free? I just found out the hard way that hydrolyzed Brewer's yeast has gluten when used as a flavoring in foods. Could you be getting cross contaminated in some way?


I am buying gluten free products and when in doubt I call the manufacturer or research your site. I had my blood work done again and it is improving so it does show I am eating gluten free. I have an appointment with the diatician again today and curious to see what he has to say.