Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neuro Appt

SGWhiskers

By SGWhiskers
in Doctors

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,202
    • Most Online (within 30 mins)
      7,748
    Maroney
    Newest Member
    Maroney
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...