Intolerance or Celiac?

[Foxblood]

Hi gang,

Recently I've discovered that I may be either intolerant or have celiac's and was just wondering if anyone could help advise which it is more likely to be?

I was regularly having really bad stomach cramps, horrible times on the toilet, chest pains and heartburn and believed it was down to wheat/gluten... it wasn't until I had a few beers one night and the following day woke up with a few red lumps on my body, thinking it was probably bug bites I ignored it... as the day went on they started getting larger and larger until my entire body was engulfed with urticaria - my lips started to swell, throat felt tight and I even had lumps on my eyelids.

It got so bad I ended up in A&E due to risk of potential anaphylaxis but due to Covid-19 I am unable to get a formal test because the sites that do this aren't currently operational. Since then I have introduced a lot of gluten free foods into my diet but sometimes eat gluten foods to keep a record for the doctors, I've noticed when I do eat certain gluten based foods it makes me almost have to sprint to the bathroom around half an  hour later and the usual belly aches etc although I haven't had another urticaria attack.(Thank God)

 

Does this sound more like an intolerance or celiac's? I guess I just wanted to know for my own piece of mind. 

 

Thank you for reading, happy to provide any more info if it helps

 

[trents]

Symptomatically, celiac disease and gluten sensitivity are pretty much the same. The only way to reliably tell if it's celiac disease is to have an endoscopy/biopsy of the small bowel to check for villi damage. But either way, the remedy is the same: totally avoiding gluten. You may also have an allergy to wheat or gluten since the many of the reactions you describe are clearly allergic in nature.

The first step of gluten sensitivity/celiac disease diagnosis is to have antibody testing done. If your doctor is not open to this, get another doctor or purchase a home antibody test kit. About $100 USD for the kits.

[Scott Adams]

Given your classic symptoms, I'm not sure you would want to pursue a formal diagnosis, as you'd need to eat gluten daily for at least 2 weeks before a biopsy, however most doctors first want to do a celiac disease blood panel, which requires you to eat gluten daily for ~6 weeks:

 

[CMCM]

Here's my 2 cents that comes from over 15 years of ignoring things and finally learning about it.  You more than likely have gluten sensitivity at the very least (not necessarily celiac).  Given your symptoms have suddenly become something you can't ignore, that led you here for information.  Good first step.  

Your gluten sensitivity MIGHT be celiac disease, or it might be non-celiac gluten sensitivity.....they can both produce the same set of symptoms and create the same autoimmune diseases and other problems.  Celiac only means your gluten sensitivity has caused your body to attack your intestinal lining.  Celiac is one subset of the much larger gluten sensitivity spectrum.  

You must be eating gluten daily over a period of perhaps weeks for it to show up on a blood test with the identifiable antibodies.   In addition, from what I'm reading now, a substantial number of tests show negative even while you still might be celiac.  My biggest mistake was to always wait for a health crisis like yours that I felt could be gluten related, I'd then go gluten free for awhile, and then on the occasions where I've had a blood test it was always negative because I perhaps hadn't had enough gluten in the period before my test. Or perhaps I didn't have enough damage yet to produce antibodies in the blood.  But stupidly,  I still wanted a positive test result to believe it.  I didn't want to change my eating habits.  Big mistake.

 I had a bit of an advantage because mother was celiac so I was familiar with celiac disease to some degree, and I finally got a gene test to see what my odds were of having it.  Turns out I have one celiac gene and one gluten sensitivity related gene.  Here's what is important:  Whether or not you have celiac (celiac disease is only one of many possible manifestations of gluten sensitivity), the solution is the same for ALL gluten sensitivity:  eliminate gluten completely.  Don't approach this like I did:  For a long time I felt I must have a solid celiac antibody diagnosis to "believe" it, so over time after each health crisis gluten crept back into my diet and I seemingly got away with it until the next big crisis or tipping point or whatever it was.  If removing gluten from your diet stops the problem, you have your answer about it.  So cut all gluten out for a month or two at the very least and see how you feel.

The important thing is to know what can happen to your body over a period of years if you ignore the problem and keep eating gluten.  It's not pretty.  Most people out there don't know the source of their health issues.  You don't want to open the door to more autoimmune diseases, which is what can happen if you ignore the gluten problem.

So my suggestion is this:  read up on this whole thing, read like a fiend, and then read some more.  Become fully informed because knowledge is power with gluten sensitivity.  The chances are excellent that after just a moderate amount of solid reading you will know far more than any doctor you encounter.  My own doctor told me "You know more about this than I do."  Yet, that's typical.  Medical schools basically ignore nutrition.  The average study is 7 hours of nutrition related study.  You read that right:  SEVEN.

Also....spend the money to get your own gene test.  You order it online.  I did one from Enterolab.com that was a cheek swab that you then send back for them to analyze.  I think imaware.com also does them, as do others.  A good first step is to know what your genes are and therefore what your risks might be.  If you then find out you have a celiac and/or gluten sensitivity genes or both, take your symptoms seriously.  So incredibly many modern health problems (besides just momentary sickness and gut troubles) are caused by gluten (especially gluten from wheat, barley, rye, perhaps oats) that the ONLY solution is to eliminate it completely in all its forms and to avoid cross contamination.  

I'll add that my 35 year old son (who has a celiac and a gluten sensitivity gene) first got dermatitis herpetiformis reactions that several dermatologists couldn't figure out....but he tried a lot of very expensive creams that didn't work.  At college he was drinking too much beer  (barley gluten) and it went from the DH to digestive upset suddenly.  Now if he even gets cross contamination, he is violently sick and he avoids gluten like the plague.  You mentioned beer, and that's one of the worst things to have if you are gluten sensitive in any of its manifestations.

Good luck.....a lot of Americans are in the same boat you are but they don't know it.

Good luck....and take your own health into your hands.  

[trents]

Good words, CMCM.