Jump to content
  • 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

Help... Neuropathy Experts Needed!


Guhlia

Recommended Posts

Guhlia Rising Star

I am pregnant. The last few weeks I have been having increasing trouble sleeping. At night, when I lay down, my arms and legs start to tingle and they get very weak, a very odd feeling. Sometimes, they start to hurt a little too. It's getting worse and worse as time goes on. It varies which side I'm laying on, but sometimes both arms get like that, even if I'm not laying on one. That's what has me worried. I know that neuropathy and gestational diabetes are related and I'm actually heading out in an hour or so to be tested for that. I'm really worried though. Does this sound like neuropathy? If so, what could be causing it? I'm 100% gluten free. I haven't eaten out in a few weeks I think. I feel great other than this and have no other signs of diabetes or anything. I have been tested previously for diabetes and it came back 100% normal. I didn't have any of these sensations in my previous pregnancy and I couldn't find very much information online. I'm terrified to tell my doctor because my Celiac diagnosis was negated on my records with subsequent testing. :) I really don't want Celiac to rear its head on my records again due to insurance. I had a hard enough time getting insurance just with having migraines. Any input would be greatly appreciated. I know I'm going to have to approach my doctor on this one and probably educate him as well. I'm really nervous about it all. I'm also terrified that something's wrong with the baby.


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

Anyone know anything? I got the diabetes test done today. I should know more on that Wednesday afternoon. I hope.

jerseyangel Proficient

Hi Angie,

I saw this earlier, but figured you had already left for the doctor. Did they give you any idea what this might mean?

I have neuropathy, but it was much worse before I went gluten-free. Mine is a combination of pins and needles feeling in my lower legs and feet, and an odd numbness in my face and left arm.

I have had the pain in my wrists and hands while lying in bed--but that hasen't happened in a while.

I wish I could offer more in the way of useful information--I can imagine how concerned you are.

Keep us posted on how you're doing and what the test reveals. Try and relax, too :)

chrissy Collaborator

angie, how far along are you? this could simply be nothing more than the weight of the baby putting pressure on some nerves when you lie down.

Guhlia Rising Star

My doctor's appointment isn't until Wednesday. I just had to go to the lab today to get blood drawn.

I used to have a weird overreaction to sensation, but I'm not sure if that was neuropathy or not. Anything that tickled or was cold was intensely painful to me, just like getting burned. I'm not having any of those sensations at all, just the pins and needles and stuff, mainly just when I sleep, but sometimes other times.

It had been just my hands and wrists and up my arms, but last night it started in my feet and legs. That's why I was really worried, because it seems to be getting worse. Plus, I tried to move my one arm last night when it was like that and I slapped myself in the face, it was so weak I couldn't control it. That just doesn't seem normal to me. I don't know if that's a neuropathy thing or not though.

Guhlia Rising Star
angie, how far along are you? this could simply be nothing more than the weight of the baby putting pressure on some nerves when you lie down.

I'm 29-30 weeks. I'm really hoping you're right. I weigh a LOT more this pregnancy than I did last time, I started out much heavier this time. Last time I was 98 lbs. when I got pregnant. This time I was 130 lb. I'm hoping that has something to do with it. Plus, my placenta is in the back this time, it was in the front last time. Maybe that's part of it???

  • 2 weeks later...
Guest Doll

First of all, I would not worry that it's diabetic related neuropathy, since that takes YEARS to develop. Provided you didn't already have diabetes before you were pregnant, it's fair to say it is not that.

Pregnancy hormones can cause people to become more sensitive overall. That may explain some of what you are experiencing.

Do you have any trouble breathing or getting enough oxygen? Do you have allergies or asthma?

Your doctor should check your Vitamin B12, Folic Acid, and thyroid levels to make sure they are normal. You might also want to consider a neurological examination. In rare cases pregnancy can trigger autoimmune neurological conditions. If you are malnourished because of Celiac and that is why your B12 is low, you can take supplements yourself. However, pregnancy can trigger autoimmune thyroid disease and Pernicious Anemia (requires B12 injections for life). Both of these will need treatment from your doctor. It's important to check your thyroid levels ASAP, because low thyroid levels in the mother can lead to a lower IQ in the baby.

There are some idiopathic causes of neuropathy that are more common in Celiac's that don't seem too resolve on the gluten free diet.

However, I would not worry. If everything checks out with your bloodwork, it's probably nothing to worry about at this point. I agree that perhpas a nerve is being irritated due to your pregnancy.


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



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

I can put John's two cents into this thread. John deals with neuropathy in his legs and feet from his high dose chemo he took 6 years ago. The feet are the worse, feel like sharp shooting pins and needles. John says he cannot feel his fingertips period. If I was to hit his feet, even in passing as an accident....he will fall to the floor and curl into a ball. If is very painful.

He is on pain meds designed for neuropathy. He regularly sees a pain management doctor. Slowly as his nerves grow back he gets a little bit better.

Guhlia Rising Star

Thank you guys for the responses. Luckily, the problem seemed to pass about a week after my first post and I completely forgot about this post. The baby has now turned, I'm assuming she was just pushing on some nerves or something because I'm not getting any of those symptoms anymore. Well, except for the waking frequently, but those are usually bathroom breaks and I wake to roll over now for some reason. :rolleyes: Anyway, thanks all. It's so nice to have a forum with such intelligent people who really care and take the time to answer your questions.

blueeyedmanda Community Regular

I am glad the problem resolved itself. :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.