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Worried- Wierd Neuro Symptoms!

bny06

By bny06
in Coping with Celiac Disease

Recommended Posts

bny06 Apprentice
bny06
Posted

Hello all! I'm am awaiting biopsy results from my endoscopy to confirm if what I have is in fact celiac.. ANY opinions would be greatly appreciated! I had a baby 6 months ago, and then had a procedure go badly which landed me in the hospital for a few days... after I left the hospital i ended up losing a ton of weight (16 lbs in a month or so- and im thin to begin with) At the time I didn't even realize, not until I started feeling really weak and noticed my stomach was bothering me- I usually have a bowel movement one every other day, and suddenly I realized I was having up to 10 a day (loose and floating- sorry tmi, but not "diarrhea"), bloating, gas etc I kept thinking it would go away, I just needed to eat more.. however no matter how much I ate I continued to loose weight and feel weaker and have stomach pains.. Anyhow I finally went to the dr- they admitted me into the hospital for hydration and evaluation. In the meantime I started a gluten free diet (turns out I have family history of celiac) They did colonoscopy/ endoscopy and said besides gastritis and esophagitis everything looked ok (no obvious signs of celiac) though I had been on a gluten free diet for 2 weeks (can only 2 weeks affect the results?)

My celiac panel was negative, as have most of the tests been, all blood work etc.. I just feel like i'm wasting away! I am STARVING i feel hungry ALL of the time (is this normal with celiac??) I also have extreme fatigue in my hands (I have two kids I carry around plus use my hands at work) and numbness feeling in my hands and foot, it feels like they are asleep or restless at night too.. anyone have this?? I'm SOO worried about these wierd neuro symptoms and like a loss of dexterity almost - i use my hands to work, and i'm just about panicking! I am still having so many bowel movements a day and stomach cramps every once in a while, but have been on a gluten free diet for 3 weeks now.. ANY advice.. or simliar stories would make me feel so much better! I'm officially on freak out mode I think!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like your in the right place especially with a family history of celiac. You really shouldn't have gone gluten free until after testing but even on gluten there can be a pretty high rate of false negatives. Once all testing is done you should give the diet a good strict try for at least 3 months. Your in a good place to learn what you need to do to keep safe and fully gluten free. Some sublingual b12 may help with the nerve issues you are having and will help your nerves heal faster. We are often low in many vitamins so do make sure your doctor runs a full vit and mineral panel on you. Last but not least with a family history of celiac make sure your children are screened every couple years as celiac can impact them in growth, learning and behavior as well as tummy troubles.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

If you're done with tests my best advice is to try a diet completely free of all traces of gluten. Blood tests can come back negative even if you have Celiac, and an endoscope may not reach the area of your intestine where there's damage. It's also possible that you are gluten intollerant, rather than full blown Celiac. In either case the treatment is to be gluten-free. Your symptoms fit very well with Celiac.

I also got some of the neuro stuff from soy too.

Try a whole foods diet (fruit, veggies, unprocessed meats, and dairy if you tolerate it well). Eat smaller amounts, but more frequently. Digestive enzyme tablets will help you digest some foods, so they're a good thing at first, and add a probiotic (yogurt, kephir(sp?), or capsules) they help heal the intestine.

I advise against replacing the gluten foods you ate in the past with a lot of gluten free versions of processed foods. Some of them contain small amounts of gluten or other ingredients that can make your tummy not feel good until your system settles down. Then, consume them in moderation.

I suggest keeping a log of the foods you eat, and if you have any bad reactions be sure to note them. Some bad reactions don't show up until a day or two after you've eaten the "bad" food. Having a log makes it easier to sort it out.

There are a lot of threads here about how to clear your kitchen of gluten tainted cooking equipment, so look around a bit...and get a new toothbrush.

Good luck to you. It stinks to feel so lousy!

bny06 Apprentice
bny06
Posted
  • Author

Thank yall so much for your reponses! So have yall had some of the neuro/peripheral neuropathy like symptoms as well ? I had my b12 level checked and was told it was normal-does that make it strange to have these symptoms? I don't feel like i'm tolerating dairy right now, so i've gone off that completely as well - I didn't really notice that until I was trying to gain weight and eat calories and everytime I ate a bowl of ice cream seemed to get even worse symptoms! (tummy ones, not neuro) I have gained 7 pounds back, by eating A TON and drinking these enlive drinks as well, but I'm still ALWAYS STARVING!!! Did yall feel that way too? Thanks again- sorry about all the questions!!

Thanks about the heads up with the kids as well.. it's actually concerning me a little - my daughter (almost 2 years) has never had solid poops, but this past week her appetite has been HUGE for her, as well has having massive looser than normal poops and more of them for a week - no other symptoms.. what is going on in our house!?!

One more question- how long did it take on the gluten free diet for yall to start having more "normal" bowel habits (aka not going ten times a day- sorry tmi)! :) THanks so much again!

ravenwoodglass Mentor
ravenwoodglass
Posted

I had severe nerve damage that did take some time to resolve but it was very far advanced. As to your B12 levels do you know what they were and did you have a previous level done to compare it to? Some doctors consider anything above 250 to be fine but research is showing that it really needs to be above 500. Also if you supplement with folate then your levels can show higher than they are and your levels can stay in the normal range for quite some time after your body is not able to utilize it any longer. B12 is a water soluable vitamin so you really can't take too much as you will simply excrete any excess. Do use the sublinguals though as B12 in food or a swallowed supplement will not be absorbed until you heal.

It would be a good idea to get the little one tested and afterwards then do give her a try on the diet and see if those BMs firm up even if her tests are negative as the false negative rate for children is even higher than they are for adults.

bny06 Apprentice
bny06
Posted
  • Author

Great! thank you so much! I REALLY appreciate all of the advice! I'm new to all of this! I don't know the exact numbers of the B12, I'll get them at my follow up.. also i'll switch to a sublingual.. I've been taking folic acid and B12 supplements for years for fertility/miscarriage/pregnancy reasons... I take 5mg of folic acid a day (which is a lot, but they had diagnosed me with MTHFR- unable to synthesize folic acid correctly), so that's interesting it may affect the B12 levels! Do you recommend a good brand of vitamins? I have been taking some from whole foods, that originally a few weeks ago I assumed were gluten free, but from reading on here, I should never assume such a thing! THanks again!

ravenwoodglass Mentor
ravenwoodglass
Posted

Great! thank you so much! I REALLY appreciate all of the advice! I'm new to all of this! I don't know the exact numbers of the B12, I'll get them at my follow up.. also i'll switch to a sublingual.. I've been taking folic acid and B12 supplements for years for fertility/miscarriage/pregnancy reasons... I take 5mg of folic acid a day (which is a lot, but they had diagnosed me with MTHFR- unable to synthesize folic acid correctly), so that's interesting it may affect the B12 levels! Do you recommend a good brand of vitamins? I have been taking some from whole foods, that originally a few weeks ago I assumed were gluten free, but from reading on here, I should never assume such a thing! THanks again!

I use Country Life for the B12 and most of my other supplements are either the Country Life of NOW. You may find those issues with your reproductive system resolve now that you are gluten free. Doctors don't know why we tend to have trouble getting pregant and with miscarriage and premature menopause but we do.

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bny06 Apprentice
bny06
Posted
  • Author

Thanks!! Yea, interestingly enough, I got pregnant with my daughter when I was eating gluten free.. We had tried SOOO many fertility treatments for years and years with lots of miscarriages.. and they had also diagnosed me with endometriosis, though it never caused me ANY pain at all, I wanted my fertility improved, and some researchers believe that endometriosis may get more inflammed with gluten.. So we ended up getting pregnant on a gluten free diet with no fertility drugs!! I guess I should have realized then (almost 3 years ago) that I should stay on a gluten free diet, but not really having any other celiac symptoms it never crossed my mind! I did have hyperemesis the entire pregnancy, which now I wander if that has anythign to do with gluten?

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