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

So Sick, Went To Doc


AVR1962

Recommended Posts

TTNOGluten Explorer

AVR,

Your symptoms sound very suspicious for hyperparathyroidism. It is frequently missed by many docs due to fluctuations in your calcium levels and not putting the whole picture together. Do yourself a favor a go on parathyroid.com and read Dr. Norman's site info, he is the world's foremost expert on this. I think it would be worth your time. Best of of luck


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

I agree with you Annette, with all the neuro issues you have had the B complex is probably essential. I am hoping that by taking the B complex you can walk more comfortably soon!

I love to walk each day too, and can understand how awful it is not to be able to. Just yesterday I could hardly walk, my diaphragm and belly was so painful. I hobbled about a quarter of the walk I usually go on. My extremities also got extraordinarily cold--like what you are experiencing.

I believe the reason I was feeling this way is that I had just been glutened the day before from another random glutening. I had diarrhea and a migraine that I was finally getting over yesterday.

I think all this was due to my brother coming over to visit. I think he often has crumbs on his clothes he carries in and then sits on my chair I use at the dinner table. He washes his hands like I asked him to, however I watched him and noticed he does it half heartedly; likely a great deal of the gluten goes onto my towel since he fails to use the guest towel and does not really soap up. I didn't realize that earlier and washed and dried with the same towel. Its a crap shoot where the gluten came from. But I have my strong suspicion since this has not been the first time and in fact has become a terrible pattern which often ruins several days for me.

However my brother, while well meaning in some respects, is very self sensitive, protective and forgetful, and not at all sensitive or considerate of the needs of others. I am probably going to have to ask him not to come into the house. I just can't deal with this getting glutened from CC each weekend he comes by!!

Meanwhile, have you tried the co-enzyme B complex? For me it has proven to be far easier to metabolize. I take it on an empty stomach. Without it after a while my heart resumes its old racing pattern. My dentist told me too that with it, my gums way improved vs not taking it. So my belief is that it helps against certain kinds of inflammation, especially taken with nattokinase.

Have you also considered that taking minerals might be essential for you too?? My general mineral absorption is still very poor even after 4 years on this completely gluten free diet. I thus have found that taking mineral supplements is important, including the silica drops in order for my muscles and joints to be strong rather than weak. The silica in particular helps with replacing cartalidge as well as bone. I think too that the minerals help with maintaining nerve health.

Some good news in all of this......urologist did recommend a low oxalate diet but told me not to go over-board. My existing (lodged) stones have not grown. He actually thinks something else is irritating the kidney itself. When I went thru this battle in my 20's it was the chlorination in the water that gave me issues. Here in Germany I am told they don't use chlorine but whatever is being used can still be giving me issues so I have gone to all bottled water.

Urologist says he thinks the tingling in my feet is due to neuropathy issues as a reult of a pinched nerve in my back and has suggested that I get a full back work-up by doc.

Bea, I did try the co-enzyme B complex but felt my nerve complex worked better and am very happy with the results. I don't know if you are havinjg any pins and needles pain between your toes but I find L-carnitine works great for that. It will take about a week for my B commplex to kick in and meantime I hopefully can be seen by the doc for my back.

The sourdough bread sounds yummy Bea!

AVR1962 Collaborator

AVR,

Your symptoms sound very suspicious for hyperparathyroidism. It is frequently missed by many docs due to fluctuations in your calcium levels and not putting the whole picture together. Do yourself a favor a go on parathyroid.com and read Dr. Norman's site info, he is the world's foremost expert on this. I think it would be worth your time. Best of of luck

Yes, this was believed to be what it was initially. I did all kinds of tests.....blood work, 24 hour urine, bone scan, scan on parathyroid. What they concluded was the parathyroid was healthy. Blood work and scan showed no issues. When I went gluten-free my calcium went from hyper to borderline hypo. I have had the parathyroids rechecked, blood work redone, calcium levels checked several times and all is good. Thanks~

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. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,845
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
    • xxnonamexx
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
×
×
  • 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.