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Self Discovery And Post Diagnosis Question
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My journey with a gluten intolerance started 8 years ago when I was 16, and hit rock bottom about 2-3 years later. I went to several doctors, which told me a different finding every time: chronic fatigue syndrome, adrenal exhaustion, IBS, reactive hypoglycemia, "nervous stomach," anemia, depression/anxiety, NORMAL, vitamin deficient, and even mono (which was misdiagnosed). I knew I had all of these things--except normal, but wanted to know what was causing all of them. To me they were just a list of my symptoms and not the root of the problem. So I kept chugging on with life, missing the max number of days in college, suffering from extreme dizziness and fatigue, vit D, C, K, B12, selenium and manganese deficiencies, constant D and C with severe abdominal cramping that would have me in tears, and the list goes on and on and on.

So last January, through keeping an intuitive mind and researching, I felt like food was the cause of all of this. What food though, I had no idea! So I decided to sign up for a food detox program with a local chiropractor that lasted 3 weeks, and included only chicken, fish, rice, most veggies and fruit. At the end of the 3 weeks we started gradually adding each food group back in, analyzing how each made us feel. I went through major withdrawals during the first week of the detox - craving sweets, breads and pastas horribly! After gradually adding everything back in gluten, dairy and eggs all disagreed with me. Gluten being the absolute worst. I cut them all out of my diet. My doctor did a blood, stool and saliva panel to see what was going on right after the detox, and the results showed a positive for gliadin antibodies in my stool, low RBC and hemoglobin counts, low cholesterol, vit D, B12, selenium and mangnesium levels, as well as very low digestive enzyme counts. She sent me home with vitamins, and told me to stick to my, basically paleo, diet.

I did, and now a year later I am feeling *almost* back to normal again. Every issue I had has subsided or gone away completely! I don't know if anyone else has had this issue after going gluten-free, but my periods have become very irregular and light, and still low libido (and I'm 24, and happily married!!) I went back to my chiropractor/nutritionist for this issue and she looked at my previous bloodwork. We are working with my endocrine system with herbs and glandular supplements right now. She suspects celiac disease, but since I have been gluten-free for so long it probably wouldn't be logical to test for it. Has anyone been tested for it after a year of being off gluten (with some cc here and there) and shown a positive?

I have enjoyed reading everyone's success stories after their discoveries with gluten, and it's so nice to know that we have a place like this to express our frustrations, thoughts, and journeys. Thanks for "listening" to mine. :)

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I was scoped and tested after seven months gluten-free and all was negative, even with what my doc called some of the best celiac 'scopers in the country.

 

So getting a positive diagnosis after so long would be extremely rare I think. You could always get the gene test, which doesn't require eating gluten and can *help* rule celiac in or out, though not definitively.

 

You can also go back on gluten for the tests, or just keep up the good work and stay healthy. I do understand wanting a diagnosis, believe me!

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    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
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