Do I Really Need To Know What I Have?

[one more mile]

HI all this is my first post. I am new to all this. Basically after having my thyroid removed (goiter) I have gained a lot of weight (20 pounds and I am 5 foot 2) and am always tired. I went off of gluten about three weeks ago ( and have lost 12 pounds and about 3 or 4 inches on my waist) I probably do not have celiac disease because I gained weight during all this. But am totally Gluten intolerant. After a week of no flour I tested it by having a lightly breaded fish. You could see the flesh of the fish though the breading. 20 minutes later I was screaming in pain.( lower abdomen and the areas before and after my joints)

My question is how important is it that I figure out which I am? I can not bare the thought of eating gluten and going through the pain, tiredness and foggy head, Just so I can get a blood test done. I will not consider a biopsy. I have been messed up enough over the years by doctors cutting me. Do I really need to know which one I have? Or can I get well enough just being Gluten free? Is there a difference in treatment?

Thanks all!

One more mile

[Fiddle-Faddle]

It's a total myth that you have to be underweight to have celiac. Many of us here were overweight until we went off gluten.

If being gluten-free fixes all your health woes, then yes indeedy, you have found your answer and don't need another test!

Besides, I'm not the only one here who believes that for at least some of us, gluten intolerance is just early stage celiac disease.

Welcome aboard, and here's hoping that you are now on a road to good health!

[GFinDC]

Heck yeah, one more mile, maybe two! Welcome to the board. If it makes you sick don't eat it is pretty good advice. How important to know for sure you have celiac vs gluten intolerance is up to you. Testing will possibly confirm your disease but is not 100% accurate either. The difference might be that with celiac there is a proven relation to body damage from eating gluten, and that link may not be so strong or clear with gluten intolerance. Then again lots of things are not real clear with celiac symptoms either. There is still a lot the doctors are learning or trying to learn about it.

[darlindeb25]

I'm with Fiddle-Faddle.....I too believe that gluten intolerance is the early stages of celiac disease. I also believe that one day, the scientist's will finally realize this too. She is also correct in telling you that many celiac's gain weight before going gluten free. Many malnourished people gain instead of becoming a stick person.

I have not been diagnosed with celiac disease, I do however have double DQ1 genes. The day will come when DQ1 genes will be included in the gene pool of celiac disease, some doctors already think so.

When you read about diabetes, you read about pre-diabetics...not quite diabetic yet, but soon will be without a change in lifestyle. I think the same is true of celiac's and gluten. If you do not want to deal with anymore testing, then live the gluten free lifestyle. If you feel better, and you know it's the best thing for you, then go for it. Good luck!

[Tim-n-VA]

It is pretty clear that if you want to know what not to eat to feel better, you have all of the information you need. But, since you asked and because people lurk without asking, I'll give one view on why someone might want to know what they really have.

There are at least three subsystems of the body that can react to gluten. You can have an autoimmune reaction (celiac) where the body attacks itself in reaction to gluten. You can have a true allergic reaction where the body attacks the gluten with parts of the body receiving collateral damage. You can have true digestive system problem where you can't process the gluten. Other than this forum, the digestive issue is usually what is meant by a food intolerance as in lactose intolerance means the digestive system can't handle the lactose, not that the allergy or immune systems are reacting.

I disagree with "gluten intolerance is just early celiac" only because I have seen people use the phrase "gluten intolerance" in so many different ways to include as an umbrella term for "something bad happens when I have gluten".

Because of the way diseases occur in clusters, knowing which subsystem is reacting can offer clues for other problems. While this doesn't preclued getting those related things diagnosed and treated, generally more information is better. There are few symptoms that are unique to one underlying cause so having more information to make the differential diagnosis helps.

Of course, if you are already gluten free or having severe symptoms, consuming more gluten to get a definitive diagnosis is a lot to go thru to get only incremental information.

[ShayFL]

Getting an official dx is your decision. Some believe it is better NOT to get the dx so there re never any insurance issues later on in life. Yet, in Europe getting that dx is very important because their government pays for your gluten-free food. Wish we had that here......

Anyway. If you are the type who will "cheat" often because you always have that nagging doubt about whether or not you really have a problem with gluten, it might be beneficial to you.

If you KNOW your body treats gluten like poison and you DO NOT want more pain so you want always be "tempted", then you can choose not to have further testing.

The most IMPORTANT THING is for you to get better and stop damaging your body. You already figured that part out.

[Lisa16]

Having an official diagnosis will not change your day to day life at all-- it is the same in the end. You can't eat gluten either way. I think we are rightly all put together on this forum. We all the same problem to greater or lesser degrees and medicine does not understand us completely.

The only difference might be knowing that you run higher risks for autoimmune diseases and lymphoma. And even that is an iffy difference because they really don't know much about the risks for g-intolerant people. I have never seen a study. Maybe somebody out there has, but I don't think it is being done. There is so much they do not undestand in this arena. I have hopes with the recent news of the link between autism and gluten. Maybe people will start looking at it more closely.

It might be interesting to get the genetic testing done through Enterolab/ the Red Cross. But even the results of that will not really tell you either way. You can have the celiac genes without being celiac and you can be celiac without the genes. But it will show if you have any of the other known "gluten intolerant" genes. I suspect that anybody who carries these genes is at risk for developing the disease and I understand that if you have them, it is certain that you will be reacting to gluten in some form or another.

Once you are gluten free, the bloodwork is a bust and a positive intestinal biopsy is also unlikely. So unless you get DH that they can biopsy, you may never know. You will have to make your peace with that. And remember that in the long run it really doesn't matter.

With this illness, there is no call for anybody to be a "celiac snob" and nobody here will ever say... "oh, you are only gluten intolerant!"

Welcome to the club.

[one more mile]

Wow thanks you for all the fast response and good information. I am also a recovered alcoholic this is my 25th anniversary, And have had to figure out that that peanuts give me bad enough migraines that eating m and m's caused me so much pain that I had a 5 day migraine. So I have lots of experiance in staying away from poison that others around me enjoy. For the last Five years , maybe longer my mantra has been " I just want to be pain free and why the hell do I sleep so much?" My kid was morbidly obese and often ill until, she figured out that she can not eat meat or milk. ( if any on has info on people that can not eat meat please send it to me) and thinks white flour is crack.

I am sure I will be tempted but if I use the addiction model and think the bite though, I doubt I will be tempted to jump back into the world of pain. Once I went cold turkey then tested myself the results were just to dramatic to ignore. I am considering trying oats in a few weeks to see if I can eat them or not. but am scared so I may not. I can live without oats.

I am frustrated and angry( I am tired of being different from other people) Given the choice of a bag of pretzels or a romantic jump in the hay I probably would have chosen the pretzels a month ago. I have been angry this month since I no doubt was left in my mind that I can not eat Gluten but I have not been tempted. The pain and rock hard gut is just more then I can do to myself.

I am done having kids so I really have no need for testing. I may do the genetic thing later.

Thanks for letting me know that weight gain is possible with this. Everything I read said weight loss. If I would have known that I may have figured this out a year ago when I first looked in to it. But it gives me some peace to know it now. Maybe this really is my main problem.

I have a few more questions to post then I am off to pack for a camping trip. Thank you so much for your help!

one more mile

[ShayFL]

Congratulations on your recovery!! 25 years. Awesome.

Many get angry. But what I have learned is that I am not "different". My husband cant eat fish. My best friend cant eat chocolate without getting D. One friend has RA and cannot eat any nightshades or grains. Another friend cannot eat any starches. My husband's best friend is allergic to chicken and shellfish. One of my daughter's friends has a peanut allergy. My Mom cannot eat pineapples or mangos. My sister cannot eat lettuce or spinach. Almost everyone I know has some sort of allergy or sensitivity. Im just like everyone else.........

[babysteps]

I am considering trying oats in a few weeks to see if I can eat them or not. but am scared so I may not. I can live without oats.

Love your labyrinth picture!

When you try oats, start with one of the certified gluten-free choices (Bob's Red Mill is one, search this site for other brands). Read the package carefully, many brands have both 'certified' and nothing-special choices.

Some celiacs cannot tolerate any oats (Am I remembering someone citing a 3% figure?). Hopefully this isn't you

Many celiacs can't tolerate nothing-special processed oats, as there is a high risk of cross-contamination (cc) from 2 sources: the processing equipment, which is usually shared with wheat, and the field, where oats & wheat are often rotated from one growing season to the next, leaving a few volunteer wheat plants in with the oats.

The certified gluten-free oats are grown in fields that do not ever grow wheat, and processed separately (usually in dedicated wheat-free facilities). I know I couldn't tolerate "regular" oats but the gluten-free ones are fine!