Gluten-Free Diet Already, Do I Really Need Testing?

[RuskitD]

Where it began, I don't know. But going back 8 months, I have had horrible abdomen bloating nearly daily, to the point of 10" difference by evening, over my morning measurement. I had sporadic bouts of diarrhea, in that time, but chalked that up to my history of having a 'sensitive digestive system'.

I spent 6 weeks in my bathroom passing vast amounts of mucus. Finally so weak as to not be able to function or eat, except for nibbling a few crackers (!) BUT had no weight loss!

I went to the doctor. I had an upper GI endoscopy and colonoscopy.

My colonoscopy showed freckles that were signs of long term acute inflammation.

My endoscopy showed acid burns leading to diagnosis of GERD and hiatal hernia.

Biopsies only looked for cancer.

The doctor was next going to order a barium test of my small intestine. He told me to come home and change nothing, until diagnosis was made.

~or~

he could begin treating me for Crohn's. I declined. As I read about it, and didn't feel it fit my symptoms!

(honestly, he is a great doctor, just not the doctor for this type of diagnosis)

At this stage I was down to no quality of life, and actually spending my few waking hours of the day wishing to be dead. (reading here helped me understand that depression was likely another symptom like the diarrhea!) Logic told me, that like dust irritating my nose and causing it to run, something was irritating my bowels and... ha ha... causing me to run!

I drug my exhausted self to the PC and Googled my symptoms, repeatedly I was led to this site. After reading here, I decided on my own to eliminate things in my diet.

I began a food/response diary.

After two days of NOT going to the bathroom like I drank GoLytely, I felt I found a piece to my puzzle. I repeatedly ate what seemed to cause no distress to my system.

After two weeks of feeling as normal as I ever have.... I added a slice of bread to my lunch, and the response was violent. I had at least one answer.

I want to wait until I have had two weeks at least of 'good days' before trying anything else new.

As I read the history of members here, my own resembles many others! Such as IBS, GERD, chronic constant heartburn, failing eyesight, etc....

I have lived pretty low carb for years, but realized I had gone back to some 'healthy' breads in the past 8 months. I see the pattern of my relationship with wheat clearly!

My question is this.

Is there any good reason for me to go further with medical testing?

Is there any benefit of having a specific diagnosis?

Am I correct in assuming there is nothing the doctor can do for me, it is up to me, right?

It could be Celiac or 'just' a gluten intolerance.

I can't see any myself, and actually see it being a bigger problem, as to having a pre-existing condition, if they chose to add it to my history. Although I understand I will have to tell my doctor, and have it in my chart, but won't have an 'official' diagnosis.

~~And you understand fully that I cannot embrace having to expose myself to gluten and the effects of it, until testing is completed!~~ I am already living in fear of a bread crumb!

The people here are more wise than I. Please give your opinions to help me make and educated decision!

Thank you SO MUCH!

(and .... the members hear have saved my life, literally! by sharing your experiences!)

[ravenwoodglass]

It is your body and your choice whether to test or not. As you know for you to be tested for celiac you do need to go back to eating gluten for a couple of months. If there is no way you can do that then you have your answer IMHO.

[researchmomma]

Your GI may diagnose you based on symptoms alone. At least Non-Celiac Gluten Intolerant.

Here are the reasons I would want a diagnosis. If these don't seem important, I would just stick to the diet and enjoy your new health:

1) Will you stick to the gluten-free diet if you don't have a Celiac diagnosis? If you eat gluten and you are Celiac, you could open yourself up to autoimmune disorders and/or cancers.

2) Are there any family members who will not support you without that diagnosis?

3) Are there family members who may have Celiacs disease? If so, it would be nice to have that diagnosis. Especially if you have children.

4) If you have children, you could always just get them tested. With kids it is important for schools to have that Celiac diagnosis for teacher support and gluten-free food in the cafeteria (we pack our own lunches so this doesn't effect us but for some it is important). Now in college it will be important but I know my GI and/or pediatrician will write a note for her.

5) if you have Celiac, then your GI is much more willing to ensure you don't have malabsorption issues.

6) if you have Celiac, some insurances won't cover you (this just ticks me off). So I guess that is a plus for not getting diagnosed although I think it is really crappy (pun intended).

As an adult, I could care less if I am Celiac or NCGI or the Queen of Sheba, but my daughter needed to hear from a physician that gluten was making her sick (even after we accidentally glutened her and all her horrible symptoms came on like a Mack truck). She is NCGI by the way.

I am sure others could add more but that is my two cents.

[RuskitD]

Thank you researchmomma and ravenwoodglass for your time in posting your replies and insights!!!! Those replies are exactly what I was looking for, very informative!!!

Its eye opening that some ins companies won't cover you if you were diagnosed! I pondered that possibility! I knew many things could be used as pre-existing, and keep you from coverage, should you change ins companies. I never thought about them maybe dropping me.

You underscored my feelings of there is nothing good to come out of a dx for me. Actually, it would/could do further harm. I do not like bread enough to want to go through violent symptoms just so I can be tested.

Thank you again!

[Skylark]

You underscored my feelings of there is nothing good to come out of a dx for me. Actually, it would/could do further harm. I do not like bread enough to want to go through violent symptoms just so I can be tested.

I wish I had known about testing BEFORE I figured out I was celiac. I figured it out many years ago, when celiac was thought to be a rare disease. I did an elimination diet trying to figure out if my constantly upset stomach and IBS was from allergies, only I discovered the "allergy" was to wheat, rye, and barley. Soy and dairy were issues too, which is really typical for celiac. I was not expecting to heal the canker sores, chronic fatigue, mood disorder, borderline anemia, blistered rash on my hand (possibly DH), and atopic dermatitis but those all eventually went away too.

Gluten is not food and I know that GoLytely response you're talking about all too well. I cannot go back to eating gluten so I'll never satisfy my curiosity about celiac, but I'm at peace with it.