
Celiac-in-AZ
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Posts posted by Celiac-in-AZ
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What a thoughtful response, KK.
I take a lozenge that has B6 and B12, along with folate. May I ask, how did you learn this information about thiamine and ataxia? I'd love to read up on it so I can better understand before asking a doctor or nutritionist about it. (And no, I have not yet been to a nutritionist but am looking for one that understands celiac.)
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Thanks for the response, Scott.
At this point, I'm more concerned about ataxia than malabsorption. My Vitamin D and B12 were slightly low right after my diagnosis, otherwise all looked okay. I have not yet found a neurologist I trust to address possible ataxia.
Good advice about the possible reflux. Other than legumes and occasional nuts, I'm basically on the Autoimmune Protocol because of all the cross-reactivities that showed up on my Cyrex tests. There's a possibility that it's a mold issue, but this is another area where I can't find the right doctor to test things.
I really wish I had the right medical professional to take a close look at me, but the search goes on.
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Hi all,
I'm amazed at how many of my health issues have improved since my diagnosis and quitting gluten and a few other sensitivities -- and I'm only four months into this! Neuropathy, pudendal neuralgia, brain fog, ADHD... all gone.
However, I have two issues that are not improving at all:
1) Instability in hip -- despite months of PT, I don't seem to be able to improve the strength or stability of my wonky right hip.
2) Reflux -- Neither my GI or ENT is sure whether to call it GERD or LPR/silent reflux, but a combo or throat pain and difficulty swallowing, along with post-nasal drip that I don't really feel. I tried a month of religious high-PH diet, H2 blocker, and algetate with no improvement. I'm now three days into using a PPI, which I really didn't want to do. I'm already struggling with Vitamin D and B12.
So, my question: Do you have one type of doctor you see to quarterback your treatment? I have one naturopath who recommends a zillion supplements to heal the gut, another who preaches patience and keeping it simple, a neurologist who doesn't really see anything relevant, and a GI whose only advice is don't eat gluten. Who do you see to help guide you through complex issues of recovery?
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That buzzing was my primary symptom pre-diagnosis. All day, all over my body, face, and head, getting worse all the time. It's pretty freaky when you don't know what it is!
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That is very telling, indeed. It helps me a ton to read the accounts from you and others who've been navigating these waters for awhile.
I have been taking 6,000 IU of D3 daily for over a year and just got blood work done -- I'm at 30ng/ml. Exactly where I was before I started supplementing. And homocysteine at 14.5 despite taking a good amount of B12. Keep in mind, I'm still less than 2 months gluten free so hoping that the gut heals and I can get those numbers to a better place!
Figuring out all of this with my 11-year-old daughter is going to to be an entirely different challenge that I haven't started to wrap my mind around. Her attitude is great, though. And she gets to go on a gluten farewell tour while we're waiting on the biopsy, so that's fun.
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Thanks for the thoughtful reply, Wheatwhacked! There's a lot of great info in this.
We went ahead and had a celiac panel done on her (she had started complaining of an intermittent sharp pain in her side anyway) and her TTG IgA is 540. We're still in the process of coordinating a biopsy, but... yeah.
I am still awaiting results of my own (non-Cyrex) panels and struggling with whether or not to believe in the cross-reactivities identified on the Cyrex panel (I have since found lots of healthy debate on the topic here) but regardless, it does all seem to be trending toward a Celiac family.
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Scott, thanks for the reply and for creating this resource for all of us!
You have a great point about insurance that I had not considered. That said, I decided more information can only be useful in the long run. For the time being, I'm being extremely cautious about cross-contamination, not eating out, and treating all of the cross-reactivities on the Cyrex panels just as I would gluten -- regardless of what additional testing says. If it turns out to be a sensitivity rather than Celiac, management (especially of cross-reactivities) might be easier down the road. I also have a kid, so a Celiac diagnosis would affect whether we get her tested immediately.
For now, I feel fortunate to know that my years of bizarre undiagnosable symptoms are likely being caused by food. The path forward is still being drawn, but it's great to be on it.
- Scott Adams and LCAnacortes
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Hey friends,
I am so confused and am curious if anyone here might have clarifying thoughts. (And bear with the long story, it is definitely celiac related.) I've been dealing with brain fog, balance issues, adult-onset ADD and vertigo for 8 years. I've had several normal brain MRIs in that time. About three years ago, I started to develop nerve issues all over my body -- first the pudendal nerve (ugh), then paresthesia of the face and eventually pin pricks and tingling pretty much everywhere. With no diagnosis or path to end the downward spiral, anxiety and depression took over. I could not find any allopathic doctor -- neurologist or PCP -- who could find anything structurally wrong or suggest anything but nerve medication (which I tried and hated). So I turned to a reputable functional medicine doctor who quickly identified the issues as being related to inflammation in the nervous system and started me on an intense protocol of aerobic exercise, meditation, cranio-sacral therapy, tons of supplements, etc. In a year and a half, I conquered the mental health stuff but the nerve and brain issues did not improve significantly.
I discovered the book "Why Isn't My Brain Working " by Datis Khazzarian and began consulting a different functional medicine doctor who subscribed to Khazzarian's line of thinking. He suggested the Cyrex Labs arrays 2, 3x and 4 (leaky gut, wheat/gluten, and cross-reactivities). My TG2, gluteomorphin and many cross-reactivities (rice, soy, dairy, sesame, eggs, tapioca, hemp) came back so high they were beyond the parameters of the tests. The functional medicine doctor said it it would not be necessary to get a biopsy, this was clear evidence of celiac and that I should also treat the cross-reactivities as if they were gluten. I was so happy to finally have a name and protocol for the mysterious force ravaging my central nervous system, I didn't mind the lifestyle change. Now six weeks after the diagnosis, I can say that my paresthesia and other physical nerve issues have been reduced by 75% and I wasn't even strict about cross-contamination for the first four weeks of that. Brain fog and ADD are unabated -- though I would not expect either of those to resolve quickly (possibly not ever) based on what I've read on this forum and others.
SO! (Here's where it gets confusing.) I finally had an appointment with my GI doc (whom I've always liked and has way fancier credentials than the other doc, a DC) just to get his perspective. He was adamant that the Cyrex Labs tests are not reliable and was aghast that the other doc had jumped to the diagnosis based on those. He was frustrated that it would now be impossible to do the biopsy without me getting back on gluten for six weeks (not gonna happen) so he asked that I immediately get the traditional labs and genetic test done right away and he would re-evaluate from there. He did concede that there's at least a gluten sensitivity and wouldn't comment at all on the cross-reactivities because he's not an allergist and those sensitivities aren't related to a celiac diagnosis. (His words.)
If the new tests come back positive for celiac indicators, it's moot and I'm happy to have more evidence. But if not... what do I believe? I'm done with gluten regardless, but there's a big difference between protocol for a sensitivity and celiac. Not to mention the cross-reactivities. My impression from older threads here and elsewhere was that the Cyrex panels were generally considered the gold standard. Does anyone active on here have experience/feelings with Cyrex or Khazzarian? Thanks in advance for any ideas or info you think might be relevant!
One last note to consider: I just found out from my parents that I had been diagnosed with most of the above allergies in 1976 at age 2 and called "likely celiac" (!!) but at age 5 the doctor suggested slowly reintroducing all to see if the disease had "passed". I had horrible stomach issues for the next 20 years, but then they magically disappeared after a lengthy cleanse. Other than some brief GERD a few years ago, they never really came back.
Which Doctor/s to See...
in Post Diagnosis, Recovery & Treatment of Celiac Disease
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I will check out all these resources. Thanks again!