Say You Have Celiac Without Dx

[BlessedMommy]

I think that this is a common scenario.  You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS.  You go to the doctor with this information and he won't test you for celiac disease.  Your health insurance won't pay for you to go to another doctor.  You try the gluten-free diet.  You feel so much better.  You find out that it wasn't just the uncontrollable diarrhea caused by the gluten but so many other things.  Your insurance changes so that you can finally go to another doctor and you find out that you would have to start eating gluten again to test accurately.  Your gastroenterologist recommends against it since you had been so sick.  Other doctors and people around you treat you like you are some sort of nutcase on a fad diet.  Sign.

 

Exactly! That seriously nails the nail right on the head.

 

Or in another case, you run into your dermatologist with a severe skin rash and he never even suggests the possibility of Dermatitis Herpetiformis or anything food related, he just diagnoses it as eczema that's being worsened by pregnancy and sends you home with steroid cream. You eventually figure out yourself that the rash is triggered by heavy wheat consumption and cut back on your wheat, going gluten free eventually. By the time you decide that you want to tested for celiac, your system has sensitized to gluten to the point where that experiment turns out to be dangerous early on and ends in hospitalization just a few days into it.

 

You now are gluten free without a diagnosis, because to do otherwise would be a form of suicide.

 

*sighs* (that's my reality)

[livinthelife]

I have Celiac Disease.

My mother has it, my only sister has it, an aunt and uncle on my mom's side and another aunt and uncle on my dad's side has it.

No, I have never been officially diagnosed. Blood tests all came back negative, but then again so did my sister's whose Celiac was confirmed with biopsy. 5 years ago I decided to try gluten free for a few weeks to see if I'd feel better and I never turned back. There has never been a doubt in my mind that I have Celiac, and I have always considered myself as having it. There is no way I will ever do a gluten challenge. My doctors have been on board with this.

 

I say I have the disease, and if people ask me how I know, then I tell them about my self-diagnosis and family history. I suppose I could get genetic testing done to be sure, but why bother.

To me, the difference between Celiac Disease and Non-Celiac Gluten Intolerance is only a technicality and both must be 100% gluten-free no matter what.

 

So, if you feel like there's enough evidence that you have Celiac, then I see no reason not to say that you do.

(I am curious whether your family members have been diagnosed or not? If not they should get tested if possible, as well as the rest of your immediate family to see if anyone else might have it and not know.)

 I would say the same. Seems as if some need a diagnosis of some sort to "believe" us. They also take it more seriously...

 

I say do what you need to make your life easier!! 

[dilettantesteph]

I've read about tests being developed which don't require a gluten challenge.  One day we will be able to get a diagnosis without having to suffer a complete relapse.

[GottaSki]

I've read about tests being developed which don't require a gluten challenge.  One day we will be able to get a diagnosis without having to suffer a complete relapse.

 

I have as well....the three day challenge is now possible in the research lab, it will take time for it to make it to a doctor's office. 

 

The one we eagerly await (and refer to as the "when we see pigs fly" test) in this family is the biopsy in a petri dish - no challenge required.  Will be great for both those that choose to remove gluten before they have heard the word celiac along with families that have multiple celiacs whom eat mostly gluten-free thus - thankfully - never developing symptoms.

[BlessedMommy]

That would be amazing to finally get a DX without having to risk hospitalization, disability, or death!

 

What do you mean by a biopsy in a petri dish?

 

I would never eat gluten for 3 days, but the 3 day gluten challenge one could be a great one to get my kids DX'ed eventually.

[MitziG]

My two cents: If you are going to call yourselves a celiac you follow these rules:

#1 Never cheat. Not a tiny bit or bite or just this once...because if you do, someone is going to tell me that "so and so is celiac and they can do it..."

#2 Celiac is forever- gluten intolerance may get better. Are you prepared to eat this way the rest of your life? Because if you aren't, someone will tell me "So and so used to have that and thy got better/ grew out of it/ it went away/ doctor was wrong maybe yours is too..."

#3 You take the same ridiculous precautions against cross contamination that we do. Because if you let mom/friend/restaurant pick off the crutons or use the same utensils/cutting board/toaster etc....then someone will tell me that I am being ridiculous/ extreme/ hypochondriac.

I do not mind people who have a genuine serious problem with gluten calling themselves Celiac...because you probably are. We all know the problems with getting a proper dx.

However people who feel bloaty and fatty so they decide to give up gluten.

.for now...or until their skin clears up/ lose weight/ get their energy back...when THOSE people say they are celiac it really rips me. All that I want is for the people who come in contact with my or my celiac kids' food, to understand that it is deadly serious. Because for us, it is.

Celiacs don't have "willpower" or "commitment." We simply have no other choice..

If that is true for you as well, then by all means, dx yourself and be at peace with that.

[sweetsailing]

I don't have an official diagnosis, however all signs point to celiac, because lord knows I have been tested for everything else under the sun and it wasn't anything else.  My family and friends saw first hand how I suffered for 2 years with severe symptoms (8 years with more mild symptoms) that resulted in 7 ER visits and 3 inpatient hospitals stays and 1 unnecessary abdominal exploratory surgery.  Anyone close enough to me that saw how much I was suffering and how much better I am without gluten would never question my need to be gluten free, diagnosis or not. 

 

By the time I had blood testing, I was already gluten free, so of course it was negative.  However, my genetic testing came back with 2 copies of DQ 2 which is the highest risk category from a genetic perspetive for the development of celiac disease.  They say you also need an environmental trigger or stressor to turn the genes "on".  For me, it was a really bad fall on a sailboat that I believe was my trigger.  I was perfectly healthy until that fall and everything seemed to go downhill after that.  And I have improved significantly on the gluten free diet. 

 

I say I am celiac and I behave as a celiac - no cheating (why would I want to end up back in the ER?), watch cross contamination, will follow this diet for the rest of my life, etc

 

I had every symptom of malabsorption including low Vit D, osteopenia, etc

 

I really don't know how it can be anything else. 

[GottaSki]

I don't have an official diagnosis, however all signs point to celiac, because lord knows I have been tested for everything else under the sun and it wasn't anything else.  My family and friends saw first hand how I suffered for 2 years with severe symptoms (8 years with more mild symptoms) that resulted in 7 ER visits and 3 inpatient hospitals stays and 1 unnecessary abdominal exploratory surgery.  Anyone close enough to me that saw how much I was suffering and how much better I am without gluten would never question my need to be gluten free, diagnosis or not. 

 

By the time I had blood testing, I was already gluten free, so of course it was negative.  However, my genetic testing came back with 2 copies of DQ 2 which is the highest risk category from a genetic perspetive for the development of celiac disease.  They say you also need an environmental trigger or stressor to turn the genes "on".  For me, it was a really bad fall on a sailboat that I believe was my trigger.  I was perfectly healthy until that fall and everything seemed to go downhill after that.  And I have improved significantly on the gluten free diet. 

 

I say I am celiac and I behave as a celiac - no cheating (why would I want to end up back in the ER?), watch cross contamination, will follow this diet for the rest of my life, etc

 

I had every symptom of malabsorption including low Vit D, osteopenia, etc

 

I really don't know how it can be anything else. 

 

Symptoms that resolved gluten-free plus genes and malabsorption sure sounds like Celiac to me.

 

There really is no need for the official diagnosis if you are living completely gluten-free.  If you want a diagnosis, I would make an appt with a GI that has real celiac knowledge and experience. 

 

Edited to add...re-testing your nutrient levels at six month intervals during recovery can be valuable data as well.

[BlessedMommy]

I treat my condition like celiac as well, although I wasn't able to get a DX it's obvious that I have severe gluten issues.

 

I'm not sure if I will ever get a DX, because I will never willingly or purposely eat gluten again. My doctor agreed that gluten caused my TIA and that's good enough for me, I don't care to go on to have a full blown stroke, so I feel that it's most prudent to just stay the course for life.