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

Visit To My Rheumatologist Today

mushroom

By mushroom
in Doctors

Recommended Posts

mushroom Proficient
mushroom
Posted

This was my second visit to this doc and I do like him; I last saw him about a year ago. So we caught up with my treatment in NZ the last year, current problems, labs, meds, etc. I then couldn't resist bringing up the subject of other autoimmune diseases and my celiac disease and how I thought my psoriatic arthritis was as a direct result of the celiac.

His response was that as far as he was concerned there was no proven link between celiac and other autoimmune diseases, and he said he had very few patients who had been diagnosed with celiac. Ah-ha, I said, diagnosed is the operative word. Most people with celiac disease remain undiagnosed; I have not been officially diagnosed myself--I had to diagnose myself after being told for years I had IBS and fibromyalgia, rather than celiac and arthritis. He blinked a few times :lol:

I think I left him with something to think about :blink:

S

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

Celiac.com Sponsor (A8-M):


flourgirl Apprentice
flourgirl
Posted

Hi Shroom! I don't know how he can state that immune disorders stand alone and have no link with one another (did I read that right?). From what I read they seem to travel in packs, so to speak. Personal experience says yes. My mom has several issues. Since going gluten-free, and having many issues clear up.....but many go worse, and doing the "rat on a spinning wheel" race to figure it all out, I also have discovered Sjogrens, Fibro, Raynauds......such a fun group! My Rhuemy doc.....who I really liked, pretty much threw up her hands and said....I can't do anything for you! I still like her....at least she is honest about her ignorance. Anyway......hope you are doing all right with your issues....glad you spoke up and left the doc speechless! :P

Takala Enthusiast
Takala
Posted

Sometimes other doctors or laypeople ask why I don't have a rheumatologist.

That's why.

Nancym Enthusiast
Nancym
Posted

My former rhuematologist (I don't need him any longer) gave a lecture to the gluten group in town here. I think he's completely aware of the gluten/arthritis link. He diagnosed me with Anklyosing Spondylitis but it pretty much went away when I went gluten-free.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
Since going gluten-free, and having many issues clear up.....but many go worse, and doing the "rat on a spinning wheel" race to figure it all out, I also have discovered Sjogrens, Fibro, Raynauds......

That's been my experience too!!! :lol:

Right now I'm trying to figure out exactly what's going on with my kidneys... it appears to be connected to my itchy rash (chronic urticarial vasculitis?) and episodes of anaphylaxis, which started after a few months on the gluten-free diet. I saw a rheumatologist in March and she was CLUELESS. She took a look at my ANA and a few other tests and said I did not have Sjogren's, lupus, psoriasis, or any other connective tissue disorder. Hmm... does it count when your own immune system is attacking your mast cells and basophils? One place that mast cells love to gather is in the connective tissues <_<

GottaSki Mentor
GottaSki
Posted
Right now I'm trying to figure out exactly what's going on with my kidneys... it appears to be connected to my itchy rash (chronic urticarial vasculitis?) and episodes of anaphylaxis, which started after a few months on the gluten-free diet.

Just wondering if your urticaria / anaphylaxis seem to correspond to heat and humidity??? I've had extreme heat intolerance for the past couple summers...but it has gotten worse since going gluten-free.

Thanks!

PS...my path to celiac diagnosis ran thru a "top" rheumatologist whom told me he doubted I had an autoimmune disease....why oh why is celiac only treated by gastroenterology???

Mother of Jibril Enthusiast
Mother of Jibril
Posted
Just wondering if your urticaria / anaphylaxis seem to correspond to heat and humidity??? I've had extreme heat intolerance for the past couple summers...but it has gotten worse since going gluten-free.

The urticaria does get worse if I take a hot shower <_< Heat can also be a trigger for anaphylaxis, but it doesn't seem to be for me... thank goodness! Just in case, I'm not pressing my luck with the sauna (even though I used to LOVE it).

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted
The urticaria does get worse if I take a hot shower <_< Heat can also be a trigger for anaphylaxis, but it doesn't seem to be for me... thank goodness! Just in case, I'm not pressing my luck with the sauna (even though I used to LOVE it).

Thanks! Still hoping my severe intolerance of heat and joint issues will resolve with recovery from 43 years of gluten :).

Archived

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

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


  • Member Statistics

    • Total Members
      126,201
    • Most Online (within 30 mins)
      7,748
    Rach 123
    Newest Member
    Rach 123
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • 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...