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Neuro Appt

SGWhiskers

By SGWhiskers
in Doctors

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SGWhiskers Collaborator
SGWhiskers
Posted

Ihad my firwst neuro appt today. My chief complaints are nerves that tingle, fasiculations throughout my whole body, aches and pains, cognitive changes, and intermittent eye pain. The doc recognized that celiac can cause problems neurologically. I also had a classic migraine today to confuse things. He listened, but I doubt perfectly, because I told him I was infertile and then 30 seconds later he moved on to my marital status and asked if I had kids. In the end, he said I had loss of sensation in my nerves, celiac and migraine. Yup. I knew that. He is sending me on to have an EEG or is it an EMG and to a neuromuscular specialist for a possible biopsy. He said he wasn't concerned about my cognitive changes because I seemed "pretty bright" which is still true, but I'm not my old self by a long shot.

I've got plans to see another neurologist at a different hospital, but I wanted your reviews of if this doc sounds as good as I'll get, or is just blowing me off. I can't afford to waste more years of my life trying to convince doctors I really am sick. Too many years of missdiagnosis.

Thanks for your opinions.

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mushroom Proficient
mushroom
Posted
Ihad my firwst neuro appt today. My chief complaints are nerves that tingle, fasiculations throughout my whole body, aches and pains, cognitive changes, and intermittent eye pain. The doc recognized that celiac can cause problems neurologically. I also had a classic migraine today to confuse things. He listened, but I doubt perfectly, because I told him I was infertile and then 30 seconds later he moved on to my marital status and asked if I had kids. In the end, he said I had loss of sensation in my nerves, celiac and migraine. Yup. I knew that. He is sending me on to have an EEG or is it an EMG and to a neuromuscular specialist for a possible biopsy. He said he wasn't concerned about my cognitive changes because I seemed "pretty bright" which is still true, but I'm not my old self by a long shot.

I've got plans to see another neurologist at a different hospital, but I wanted your reviews of if this doc sounds as good as I'll get, or is just blowing me off. I can't afford to waste more years of my life trying to convince doctors I really am sick. Too many years of missdiagnosis.

Thanks for your opinions.

I have found it is really hard to judge a new doc (in most cases--others just jump out as really bad) on a first visit. Any time they do not just blow you off has to be considered a positive :lol: But a second opinion as a basis of comparison can't hurt if you can afford it You can then compare if they are both coming from a standard neurological position or if one puts more thought into it than the other and is willing to consider alternative diagnoses and possiblities, testing recommendations, etc. If they both seem much the same then you quite probably are not going to do much better without going through the entire neurology directory. Just my thoughts.

ang1e0251 Contributor
ang1e0251
Posted

What were you expecting to hear from this doc? Did you have a guess at what kind of diagnosis he might offer? Are the tests he's ordering along the lines you expected? I thought you were one step ahead when he said celiac disease could attribute to some of your symptoms. Most don't know that much.

What about vitamin testing? Did he say anything about dificiencies being a possibility? It's hard to get one stop shopping with all the different organs and systems that can be affected by celiac disease.

Amy Joe Rookie
Amy Joe
Posted

An EMG is a very good place to start with. It will help determine any small or large fiber/nerve damage. I have had many years and many NL's. To have one at the first appointment order an EMG is a good sign that he IS listening to you.

I had 1 done last summer. Not for Celiac but for Chiari Malformation and Autonomic disorders of the Sympathetic Nervous System. Mine came back with small fiber neuropathy, POTS.

Neurology is a very difficult part of medicine and takes a lot of testing. It is hard to believe that NL is about 20 years behind other medical fields such as cardiology or breast cancer.

I would make sure your B12 and D levels are in the normal range and depending on where you live a Lyme's test.

Amy Joe

SGWhiskers Collaborator
SGWhiskers
Posted
  • Author

Thank you for your opinions about this neuro. I agree, it is hard to judge a doc after a first appt, so your insights are especially valuable. I'll be seeing the other neurologist because of a change in my insurance, but have the option to see this one again for a higher copay. So, now I have an idea that he is at least typical and possibly good and now I'll wait the many months for the next neuro appt.

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      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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