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

Tinglying In Feet And Face


bisja

Recommended Posts

bisja Apprentice

Does everyone here thats had any tinglying feelings neurologic symptoms always shown a vit or min

deficiency or have you had these feelings even though you show no deficiency? Had them leave after being gluten-free?


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Yes, others here have had symptoms such as yours. The neurological symptoms seem to be the last to subside.

jerseyangel Proficient

I had tingling in my face, lower legs, feet and left arm for about a year before being diagnosed. My left arm also had an "altered" feeling--somewhere between being asleep and tingling. The bottoms of my feet would have sudden, stabbing pain.

I didn't have any testing for deficiencies, but these symptoms did resolve after being on the gluten-free diet. The relief was gradual over months. I'll be gluten-free 3 years in June, and I still have a bit of numbness on the left side of my face at times, but that's it.

bisja Apprentice

Did any of you also suffer like chronic fatigue? I have one better day do some house cleaning and the next day feel terrible sometimes for days after feel terrible? Just wondering if the gluten can do alot of this. I also have alot of muscle pain.

jerseyangel Proficient
Did any of you also suffer like chronic fatigue? I have one better day do some house cleaning and the next day feel terrible sometimes for days after feel terrible? Just wondering if the gluten can do alot of this. I also have alot of muscle pain.

Yes--fatigue is a very common symptom, and it can persist for a long time even after taking gluten out of the diet. Muscle pain is also a symptom.

bisja Apprentice

This is all so crazy I am 54 years old and had stomach problems on and off all my life but the last 2 years have been the worst, I was very anemic was blamed on the change of life, then got mononucleosis, then said I had Lyme Disease on abx for 6 months now off that for a week and a half sent in tests to eneterolab and found out I have a celiac gene and a gluten sensetivity gene, still have these symptoms will go to my reg doc April 16th but do not want tunnel vision being put on Lyme as was already told to me the Lyme was causing my stomach problems and it deffinately wasn't the cause for me. I am hoping my immune system will get much stronger now that I get the gluten out and the dairy. This was the test results I got back then they explained each one.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 17 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 10 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

They said no malabsorption problems guess thats why I was wondering if anyone had these problems from gluten even without vit min probs.

ravenwoodglass Mentor
This is all so crazy I am 54 years old and had stomach problems on and off all my life but the last 2 years have been the worst, I was very anemic was blamed on the change of life, then got mononucleosis, then said I had Lyme Disease on abx for 6 months now off that for a week and a half sent in tests to eneterolab and found out I have a celiac gene and a gluten sensetivity gene, still have these symptoms will go to my reg doc April 16th but do not want tunnel vision being put on Lyme as was already told to me the Lyme was causing my stomach problems and it deffinately wasn't the cause for me. I am hoping my immune system will get much stronger now that I get the gluten out and the dairy. This was the test results I got back then they explained each one.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 17 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 10 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

They said no malabsorption problems guess thats why I was wondering if anyone had these problems from gluten even without vit min probs.

Although your malabsorption levels are good that doesn't always mean that there are not deficiencies as the fecal fat score measures the amount of fat that is in your stool not the vitamin and mineral levels. You may want to get a good sublingual B12, that will help resolve the nerve issues more quickly.


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



Celiac.com Sponsor (A8-M):



bisja Apprentice
Although your malabsorption levels are good that doesn't always mean that there are not deficiencies as the fecal fat score measures the amount of fat that is in your stool not the vitamin and mineral levels. You may want to get a good sublingual B12, that will help resolve the nerve issues more quickly.

thanks I was wondering about that fecal fat score as I eat very low fat meals as always get such bad heartburn from anything fatty would that make a difference in that test? Also what brand of sublingual B12 do you recommend? Plus how accurate do you feel the blood tests are they use to check for vit. min. deficiencies I have heard some people say that they are not that accurate.

ravenwoodglass Mentor
thanks I was wondering about that fecal fat score as I eat very low fat meals as always get such bad heartburn from anything fatty would that make a difference in that test? Also what brand of sublingual B12 do you recommend? Plus how accurate do you feel the blood tests are they use to check for vit. min. deficiencies I have heard some people say that they are not that accurate.

I take the Country Life vegetarian sub-lingual B12 with folic acid. There are other good brands also but I like the Country Life myself. I also use Royal Jelly (from bees) which has some B12 in it also and that seems to help my appetite quite a bit.

As far as the accuracy of the blood tests for levels folks are right about them not being a great tool, especially the B12 levels which can be bottoming out for quite a while before it shows up in the tests. However they can be useful when it comes to assessing how well we are healing if the tests are run when we first start the diet and then rerun at 6 months and a year postdiagnosis.

As to the fat and heartburn issue, your celiac could be impacting the function of your pancreas and or gallbladder. You may very well find after being gluten-free for a few months that high fat foods no longer cause the distress you are having now. I always thought I couldn't handle spicey foods, a spicey burrito or taco would lead to hours of pain, it turned out it wasn't the spice it was the poison it was wrapped in. I now enjoy a lot of foods that I couldn't eat prediagnosis, as long as they are gluten-free. I can't say for sure that will be the case for you as we are all different but you may be pleasently surprised after you have throughly healed.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.