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Diagnosed 6 Months Ago Still Having Problems


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#16 Ninja

 
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Posted 15 January 2013 - 02:48 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?
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#17 Chaff

 
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Posted 15 January 2013 - 02:55 PM

For the hair loss, there's always the possibility of iron being involved. Checking that in addition to whatever else you're testing might be good. I have iron overload AND Hashimoto's, so the symptoms overlap. Anyway -- a simple iron panel (serum ferritin especially) can rule out iron issues.

If you haven't been checked for SIBO, it might help. But that wouldn't apply to all your issues -- still, nice to rule out.

I'm confused about Crohn's. I didn't think it was an easy thing to rule out through basic testing -- I thought it was more difficult to diagnose than that. Have you considered posting your issues on the Crohn's forums to see what they think?

Other than that, a lot of things can cause chronic diarrhea, but if nothing is determined I think they label you IBS. You could also look into what IBS folks tend to get diagnosed with once they get a more firm one and explore those.

Also, there is the possibility of severe food allergies or intolerances. Fructose malabsorbtion can cause diarrhea, for example. It's unlikely to be giving you this level of diarrhea, but then again I don't know your diet -- a juice fast would give me severe GI issues. Anyway, something to consider if you're looking for ideas.

Good luck, and please keep us posted.
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celiac, hypothyroid, hereditary hemochromatosis
 


#18 gemini1962

 
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Posted 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!!!
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#19 Madagascar

 
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Posted 17 January 2013 - 06:00 PM

it sucks, doesn't it? i'm sorry you're still having such serious problems.

i can't say enough good things about probiotics and the digestive enzymes - seriously. i would go get those today and start taking them! personally, i'd also take some immodium and get the diarrhea stopped. that is so debilitating to your body. any vitamins you are taking, or nutritients from your food are not being absorbed as long as you've got that going on.

as far as your doctor's appt, i think i would ask to be tested for the antibodies produced if you have Hashimoto's - an autoimmune disease where the body attacks the thyroid. just having the regular overall thyroid test isn't good enough. I've been wondering about it for myself and it sounds like you need the separate T3 and T4 numbers, as well as the overall and the antibodies. If you have Hashimoto's (celiac disease increases the risk of having it), your thyroid numbers can go up and down, from underactive to overactive, and one test might not catch the abnormalities. i'm going to ask to get checked for the antibodies.

my mom had ulcerative colitis, and no doubt celiac, although she's passed away before we learned about all of this, and she had her colitis under control for the last 10 years of her life. she attributed it to eating about 2 cups of Nancy's Yogurt every day. She did take her meds, but she'd had colitis for 40 years and the meds never controlled it before she started the yogurt. it's got active probiotics - you don't have to eat the yogurt if it bothers you, you can take a probiotic. yogurt has almost no lactose because it's already broken down, but if you are sensitive to casein, the milk protein, that might be a problem.

i was reading a commentary a few days ago on a medical journal that said that probiotics have healing effects on the gut. perhaps it would help you.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.




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