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

In Need Of Advice


cupp125

Recommended Posts

cupp125 Rookie

Hi Everyone,

I was diagnosed with celiac disease about three years ago and for the last two years (and most notably for the last six weeks), I have been having some pretty severe health problems.

Horrible itching (2 years--finally convinced Derms to test for DH, but waiting on results)

Fatigue

Dry mouth

Rapid, rapid heart rate, especially when standing

Drops in blood pressure

Dizziness and lightheadedness so bad that I can't leave the house and lost my job

My heart skips beats.

Those are the major things. I've seen twenty some doctors and recently saw an allergist who told me I was allergic to carrots, lettuce, basil, oregano, soy. I've seen cardiologists, neurologists, dermatologists, celiac disease specialists, and nobody, NOBODY can figure out what's wrong. The nearest I got was the Card'gst suggesting P.O.T.S. (but the neuro didn't seem to agree). My question is, is it possible that these symptoms are coming from food allergies? Most notably rice and corn. On two occasions eating rice put me in the ER with dizziness and palpitations. Today, I ate corn for the first time in two days and instantly felt dizzy and my heart started beating crazily. Potatoes seem to make me itch much, much worse.

In other words...I'm losing my mind, doctors can't seem to help me, and I'm wondering if anyone else has experience with this. I desperately need help! I'm getting married in five months and I'm terrified that I won't be able to :(.

Thanks!

- Colby


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Really, you have figured out some of your allergens already. Rice, corn and potatoes are obvious culprits. You need to do an elimination diet to figure it all out.

It sounds to me like you may have a lectin intolerance. Here is a link to read more about it. Open Original Shared Link

You might also have adrenal fatigue, and the drop in blood pressure suggests low aldosterone as well.

You may be low in potassium and magnesium, that would cause heart palpitations and skipping. Low B vitamin levels could cause that also, as could low levels of vitamin D and ferritin (iron).

I suggest getting a blood test to check for nutritional deficiencies.

cupp125 Rookie

Thanks so much!

I've had a ton of blood work done and the only deficiencies noted were B12 and A (about a month ago). I took supplements for the A and shots for the B12 and both are now back to normal. I'm trying to start an elimination diet, but it's been hard to figure out what exactly I

can eat. Everything seems to cause some sort of reaction, be it severe itching or weird brain fog/dizziness. Right now corn, rice, potato, and tomatoes are out. Fortunately I have an appt. with another allergist on Tuesday, and I'm hoping that she can help me definitively pin some of these things down so that I can try to get back to a normal life. I'd much, much rather have food allergies than this P.O.T.S. thing my cardiologist seems to suspect. Avoiding foods is a lot easier than trying dozens of meds to get minor relief. I'm a little concerned that on top of celiac disease a ton of food allergies will really make life tough, but I really just want to feel better. I'll do anything.

dbmamaz Explorer

I probably dont have celiac, but i have tons of food allergies including wheat, barley, malt and yeast . . so i'm not eating gluten anyways. I went to an allergist who specailized in food allergies, and also took a sensitivity test - i took the A.L.C.A.T test because it covered more foods than anything else. I'm now on a very restrictive diet, trying to test foods back in one at a time. Its kinda frustrating, but I did finally get rid of all intestinal distress (ok, the beans brought it back, so I guess i'm still off beans).

Doctors only know what they are taught, and they are mostly taught about diseases they can cure with medicine. Try eliminating foods, start with more food testing if you want so you know where to start, and see if it helps.

hope you feel better soon.

Juliebove Rising Star

I am allergic to dairy. The last few times I ate out and found a speck of cheese in my food, I picked it out and carefully sorted through the rest looking for more cheese. But a few hours after eating, I felt dizzy and panicky and my BP dropped rapidly. So it sure could be a food allergy.

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. - trents replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - trents replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - suek54 posted a topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - xxnonamexx replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

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

    • Total Members
      133,247
    • Most Online (within 30 mins)
      7,748

    Noisette
    Newest Member
    Noisette
    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

    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    • suek54
      Hi Im new to this game, so bear with me.  May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far.  The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.
    • xxnonamexx
      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
×
×
  • 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.