Jump to content
  • 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):

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. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

    2. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    3. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    4. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    5. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

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

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...