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In Need Of Advice


cupp125

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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


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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.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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