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

Doctors!


jhol

Recommended Posts

jhol Enthusiast

so,

 

went to the docs today to see if i could hurry up the allergy tests. while there i mentioned the weird tingly thing thats going on with my "ladybits" the really dry mouth, cold hands, feet going "white" in the bath, the rash on face thats not gettin any better ect,ect. 

 

what did she do for me? she told me to go and buy some anti histamines , take one a day for 8 weeks and if it helps your symptoms ( or something like that) then you do have allergies????

 

i just said ok and left. so do i eat the foods that i think are causing me problems- coz if im not eating them how will i know if the anti histamines are working!!! or do i just completely ignore what she said.

 

this is why i hate going to the doctors- i just feel like a complete wimp now for not saying-seriously are you having a joke!

 


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

I would leave the histamines at the drugstore, but That's me.  I left prednisone at the store recently when I had an unknown rash.  The rash went away a few days later.  I would see if you can figure out which foods do cause a problem.

 

I have had my allergy tests and am glad for them.    I hope yours will help you out too.

 

Diana

GottaSki Mentor

I would take Benedryl the next time you have the symptoms you think are allergic in nature.  I have to take it whenever one of my intolerances jumps in my path -- I'm not a big fan of the prophylactic anti-histamine approach -- my allergist had me trying several different ones to try to solve my heat/exercise intolerance/allergy -- the only one that worked was Benedryl -- of course it also makes me so tired that I no longer have a desire to exercise - so I only take as needed.

 

If you aren't sure what is causing the reaction -- maybe try the one a day method?

pricklypear1971 Community Regular

Have you discussed Raynauds Disease with your doctor?

Open Original Shared Link

And the interesting thing about antihistimines is that they can suppress autoimmune as well as allergic responses. So, if I'm in an AI spiral I will take Claritin every other day for a while. It helps pull me out. Of course, it isn't advisable to stay on antihistimines to suppress AI symptoms....but it may be useful to know. Also, using them can mask symptoms, so be careful.

Takala Enthusiast

Yeah, the time I got the really horrible poison oak rash in places you cannot imagine (including my face  :( ) I was dosed to the gills on Benedryl, and spent several weeks dozing on the couch waiting for it to go away - but at least the side effect was that my arthritis didn't bother me.  Why is my hip not killing me, I wondered ?  So I looked up the Benedryl side effects for the first time, in between naps and applying caladryl  lotion (the liquid form), and found out it acts somewhat like an antidepressant and anti- inflammatory.   :lol:  If only one Benedryl capsule didn't wipe me out.    I will still take Claritin (the elixer of the Gods) when I go skiing, because the elevation change coming and going plays havoc with my inner ears otherwise, and the descent from 8000' feet to home in less than 2 hours can make one deaf if they have any congestion.  I think this is a double edged sword because this class of drugs, anticholinergic, besides making one drowsy, do also tend to make one's mouth drier (not good if you already have this) and decrease sweating, plus they can make you slightly less coordinated and long term use can cause memory loss.  Open Original Shared Link

 

I wet my hair down to provide cooling in warm weather exercise, and sometimes my shirt, giving me a perpetual look as if I just fell into the water bucket or hit myself with the hose spray. Those lightweight, wicking synthetic fabrics that you can get for hot weather sports really do make a difference.   I used to think that this stuff was too frou-frou, but growing up without air conditioning, where a hot day was only 85º F,  I didn't have much concept of life goes on anyway in the triple digit heat.  To many people, they might still think 85ºF is a hot day.  :lol:   We are having cold nights this spring, and still every morning when I first go outside I am still shocked that the sort of warm day could be followed by temps dropping that far, and I'm used to this.  Next month, swimming, I think. Oh, my, gosh. :o

 

Other people here have reported that they have taken acid blockers which also have the side effect of acting as a sort of antihistamine/anti inflammatory in those situations where they really need to damp down a reaction.  I know that the time I have combined the claritin and zantac to get thru a situation of possible exposure to cross contamination when traveling it worked, other than I was groggier than usual (the regular disclaimer, "kids don't try this at home and don't think this fixes your food reactions" applies)  :ph34r:

Gemini Experienced

so,

 

went to the docs today to see if i could hurry up the allergy tests. while there i mentioned the weird tingly thing thats going on with my "ladybits" the really dry mouth, cold hands, feet going "white" in the bath, the rash on face thats not gettin any better ect,ect. 

 

what did she do for me? she told me to go and buy some anti histamines , take one a day for 8 weeks and if it helps your symptoms ( or something like that) then you do have allergies????

 

i just said ok and left. so do i eat the foods that i think are causing me problems- coz if im not eating them how will i know if the anti histamines are working!!! or do i just completely ignore what she said.

 

this is why i hate going to the doctors- i just feel like a complete wimp now for not saying-seriously are you having a joke!

All of your symptoms are related to other autoimmune problems that occur in tandem with Celiac.  I am not saying that you have another AI disease but your doctor should have known this and tested you for a few.  Mainly.......really dry mouth can be Sjogren's Syndrome.  Cold hands can be from thyroid disease or Reynaud's Syndrome and the blanching of your feet in the bath definitley sounds like Reynaud's to me.  I have both of these but my symptoms are loads better after being gluten-free for 8 years.  Maybe a full thyroid panel and blood work for Sjogren's antibodies might be a good idea?  There is no test for Reynaud's but the fact that your feet go white is a no brainer for that one.  That's your circulation shutting down, momentarily.  Do your feet turn bright red after the blanching stops?

jhol Enthusiast

hi,

 

gemini- i had thought of these but i thought id see what the doctor had to say- think im gonna have to get a bit more "aggressive" in my dealings with them lol. thing is all my tests came back negative so ive kinda been left to it- as far as the doctors concerned theres nothing wrong with me. im thinking of finding out how much it,d be to go private, at least id get some answers then. 


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

hi,

 

gemini- i had thought of these but i thought id see what the doctor had to say- think im gonna have to get a bit more "aggressive" in my dealings with them lol. thing is all my tests came back negative so ive kinda been left to it- as far as the doctors concerned theres nothing wrong with me. im thinking of finding out how much it,d be to go private, at least id get some answers then. 

 

Hi J!

 

I wish I had been more proactive when each and every doctor I went to found nothing wrong with me for over 25 years -- listen to your body -- when doctors say nothing is wrong -- they should say -- I don't know the proper tests to run to find out what is wrong with you.

 

Stick to your guns - find another doctor - read all you can and don't ever give up.  You are the only one who knows what is going on in your body.

Gemini Experienced

I know how very difficult it is trying to find a doctor who will work with you.  That was my life for over 20 years and I ended up giving up, knowing full well that at some point, whatever was wrong with me would really come to the surface and it did.  I am still pushy with regards to whatever I need and don't feel guilty about it either.  You do what you have to do.

 

Good luck and I really hope you can find out some answers but keep in mind the AI problems I stated because those could be the culprits.  They occur very often with Celiac, regardless of what the blood work says.

foam Apprentice

Don't knock the anti histamines I take Zyrtec every single day and it's improved my quality of life a lot. No more itchy acne like sores, like above they can be a pretty good and relatively harmless immune modulator. p.s cold hands and tingly extremities (don't know if lady bits qualify but they might) is classic B12 deficiency. I've had tingly and cold hands when I've been really low a few times. I hope that's all it is.

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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    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

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.