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.

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

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748

    Maya Baum
    Newest Member
    Maya Baum
    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

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.