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Symptoms And Should I Be Tested?


BeckyMR

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BeckyMR Newbie

I am new to this forum and wanted to share a little bit about me and get some advice from those who have gone before :)

This is my symptom history...

-severe constipation all my life (think worst case scenario)...I NEVER struggle with diarrhea

-psoriasis appeared on my knees and elbows about 15 years ago (knee has never gone away)

-after birth of my 2nd child... chronic upper back pain started (between shoulder blades) and has continued off and on for 9 years; have been treated by chiropractor;

-always struggled with not having stamina despite exercising and eating healthy; I always am the first to need to rest

-Always known to many as "FORGETFUL" and have struggled with brain fog for the last 5 years

-4 years ago I started having sinus stuffiness on my right side. The ENT did a cat scan and said it was all normal and that maybe it was due to a deviated septum.

-I started having this anal pain which is like a charlie horse in my anus. It is EXTREMELY painful and lasts for 30 min or so. My mom also has this. I know it has something to do with what I eat and am curious if anyone else has experienced this???

-20 months ago I had a complete reconstruction done on my left foot to correct a congenital defect. They did 3 bone grafts and one did not heal. The doctor was baffled and said there was a 5% risk category for this to happen and I didn't fit any of the risk factors: age (I was almost 35 at the time), diabetic, and a smoker (I am neither of the last two).

-1 year ago my OB-GYN diagnosed me with PCOS (Poly Cystic Ovarian Syndrome)

-8 months ago we adopted 2 older children to add to our 3 bio children and life has been a little more stressful!

-3 months ago I had another surgery to correct the bone graft that didn't take from the first surgery

-after the surgery I suffered from EXTREME diarrhea from a bug I picked up in the hospital

-since the surgery my digestion has gotten much worse. My stomach gurgles after I eat and I have extreme gas.

-I did a saliva test to test my hormones and cortisol levels. My hormones are off and while cortisol is normal, the test summary says that they are being taxed and I am headed to adrenal fatigue if I don't change some things. I also got my thyroid tested and am waiting for the results to come back (maybe today)

For the last 3 years we have eaten a limited amount of gluten. My daughter is ADHD and we were able to pull her off of medicine after we took gluten out of her diet. I had never been totally gluten free until a couple of weeks ago when I decided to try and see if it helped me. A friend of mine who is a registered dietician and nutritionist told me not to get tested so I wouldn't have it on my medical record for future insurance purposes.

My questions:

1. The more I read the more I think that I may be a celiac and not just "gluten intolerant" and would like to be able to affirmatively tell that to people since I will have to do so the rest of my life. Has anyone had trouble getting health insurance if they had to switch or had a higher premium for life insurance?

2. Since I have been gluten free for the last 3 weeks (with one or two mistakes), do I have to go back to eating gluten for a month to have the test done accurately?

3. The first week I eliminated gluten I felt great and saw my swollen belly begin to shrink and look normal. Last Friday I reacted to something, could be dairy which I know I am sensitive to, but have had trouble getting over it and seem to be reacting to everything...soy, beans, minimal dairy (which used to not bother me) this week. What are your experiences with other sensitivities and what do I need to eat to heal?

4. Does this sound like celiac or could it be a dairy allergy or intolerance?

Thank you for your input! I go back and forth on thinking it may be celiac or it may just be an allergy to dairy or something else. I just want to hear from others who have walked this road and can share their experiences with me.

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ravenwoodglass Mentor

My questions:

1. The more I read the more I think that I may be a celiac and not just "gluten intolerant" and would like to be able to affirmatively tell that to people since I will have to do so the rest of my life. Has anyone had trouble getting health insurance if they had to switch or had a higher premium for life insurance?

Yes some folks have had trouble with insurance once celiac is diagnosed as it would then be a preexisting condition.

2. Since I have been gluten free for the last 3 weeks (with one or two mistakes), do I have to go back to eating gluten for a month to have the test done accurately?

Since you have been gluten light for quite a while and gluten free for 3 weeks 3 months back on gluten would be the best thing to do. Even then you could have a false negative.

3. The first week I eliminated gluten I felt great and saw my swollen belly begin to shrink and look normal. Last Friday I reacted to something, could be dairy which I know I am sensitive to, but have had trouble getting over it and seem to be reacting to everything...soy, beans, minimal dairy (which used to not bother me) this week. What are your experiences with other sensitivities and what do I need to eat to heal?

The easiest and IMHO best way to heal the fastest is to go with whole naturally gluten free food.

4. Does this sound like celiac or could it be a dairy allergy or intolerance?

Yes IMHO it does sound like celiac or gluten intolerance. It isn't unusual for us to need to avoid other foods at least until we have healed. Some of those we may be able to add back in after we have healed.

Thank you for your input! I go back and forth on thinking it may be celiac or it may just be an allergy to dairy or something else. I just want to hear from others who have walked this road and can share their experiences with me.

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      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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