Has Anyone Been Told They Have "mild Or Early" Celiac?

[DebbieM]

Hello~

I am looking for a little advice and would be so grateful if anyone has any input on my situation.

I was off gluten for 9 months. Did a gluten challenge for 3 months and did bloodwork and biopsy.

Tested positive for both Genes, negative for celiac panel, and endoscopy results said "inflammation of small intestine suggestive of early or mild celiac, but not diagnostic of this". He suggested a few more months on gluten diet and do another biopsy.

So...I am wondering if anyone else was ever told their biopsy was "suggestive of early or mild celiac"?

Thanks in advance,

Debbie

[ravenwoodglass]

I would consider myself diagnosed rather than continuing to damage yourself with months more on the diet to make the doctor happy. Your doctor appears to be one who wants your villi totally destroyed before he will give an 'official' diagnosis. You had 9 months off gluten and healed. I am willing to bet the last 3 months have not been pleasent. It is of course your choice but I would just go back off gluten and stay that way for life. Celiac is the only disease I know of that doctors want to have us as sick as possible before they will diagnose. IMHO your doctor should have told you to continue the diet and then if needed come back in a few months and see if you have healed. That would IMHO be pretty conclusive also. Do be careful if he gave you any meds, even if they are samples take them to your pharm and make sure they are gluten-free. The challenge will sometimes bring on things like ulcers that will heal once the offending substance, gluten, is dropped.

[AlysounRI]

Ugh ... I have to agree with Raven.

Don't go back on the poison and check the meds he gave you.

Also, get copies of your results and find a new GI doctor!!

I didn't test positive for celiac disease but I have my doubts. A month back on the gluten and I was walking undead.

But I am not fighting the results and I am gluten-free for life now, with such positive results now.

Just my two sous,

~Allison

[ciavyn]

I read this earlier, but wanted to wait and see what someone else said. My opinion: that's what we call celiac disease and a resistant doctor. Good god. I wouldn't continue down that path if I were you. Then again, I have to work with people, so gluten and I are a bad combo in small spaces! But I'd be darned if I'd continue to live like that. Best of luck on whatever you choose, though.

[DebbieM]

Thank you all...

I can't figure out why it is so important to me to have a definite diagnosis. I guess I know I am going to go back to gluten free again, so now is my chance to find out for sure!?!? My mom had it. I think if I knew for sure I would be more careful with my children?!? I also feel a diagnosis will be the difference (for me) in looking at cross contamination or cosmetics.

I appreciate your comments and for giving me alot to think about.

Debbie

[tarnalberry]

like "mild pregnancy" or "early pregnancy"? I mean, you're still pregnant in those cases.

celiac is the same way - your intestines are being damaged. why would he tell you to KEEP damaging yourself? (that's a rhetorical question - we all know that some doctors think that celiac disease is the last thing they ever want to diagnose because... well, they don't have any good reasons since "the diet is hard to follow" is a BS "reason.)

[DebbieM]

That is what I was thinking. You can't have "a little" celiac, which is why I was so frustrated after doing the gluten challenge and having the endoscopy I was hoping for a more definitive answer.

I have not even spoken with my dr. All this info came via his nurse and a letter in the mail. I am waiting for him to return my call. A friend's husband who is a GI gave me the name of a pathologist who specialized in GI who can look at my slides for me. Not sure if that is worth it? Also made an appt. with another GI for 2nd opinion in a few weeks...AGAIN, not sure if it's worth it.

Thanks,

Debbie

[kayo]

I was about to post the same thing, being a little bit celiac is like being a little bit pregnant!

Your mom had it, you have the genes and you did well on the gluten-free diet. It sounds pretty conclusive to me.

I will never understand why doctors want us to be on death's door before they will agree we have an illness. Damaged villi is only one symptom of the illness. They should be thrilled we're tackling this in the early stages and making positive life changes before we're so damaged we can't function.

Definitely get a new doctor.

I'm thinking we should start a new thread called 'jackass doctors' so we know who to avoid! I have at least 3 to add to that list

[DebbieM]

One more question (since everyone is being so helpful

I did a food panel with my Naturopath a year ago before I went gluten free.

He did the IgG Elisa and my gluten was 0.515

Does that mean anything to anyone? I am assuming it means I have a sensitivity to gluten?!?

Thanks,

Debbie

[ravenwoodglass]

Thank you all...

I can't figure out why it is so important to me to have a definite diagnosis. I guess I know I am going to go back to gluten free again, so now is my chance to find out for sure!?!? My mom had it. I think if I knew for sure I would be more careful with my children?!? I also feel a diagnosis will be the difference (for me) in looking at cross contamination or cosmetics.

I appreciate your comments and for giving me alot to think about.

Debbie

You DO HAVE a diagnosis. It was 'early celiac' instead of what was likely 'partially healed celiac' but you do have a definate diagnosis. I would accept it especially with a mother who is diagnosed.

[Mizzdy]

Hi, new here! In 2003 I had the a slew of tests for GI problems, the dr did blood work and took biopsies and told me I was on the border and left it up to me to decide but didn't say anything like I would end up sicker than a dog soon if I didn't stop eating gluten! I just had an inkling of the long term damage could be! I went low carb to loose weight, twice! lol Felt pretty good but thought it was just exercise and the weight loss. This last few years things have added up and have been sicker than all the other years I have been sick! lol I have a graves disease with the eye disorder. Why would and do drs do these things? Why do they not tell you how bad things can really get! A shrug and eh take the news and do what you wish with it is basically what my dr said all those years ago. I wonder how bad my intestines are now, and if I could have avoided diverticulits, if my migraines are just another symptom, if if if!!

[mushroom]

There is a startling resistance on the part of doctors to tell patients they have a problem with gluten. Most of this is because they have been taught to believe that if it is not definitely "CELIAC" it is not a problem And to say someone is definitely *celiac* unrealistic hurdles must be mounted. If they would just say, "I don't know with your present testing whether or not you are celiac; why don't you try a gluten-free diet and see how you do?" we would all be a lot better off. Most of them are not even aware of non-celiac gluten intolerance, unfortunately and so we all suffer. Isn't it great that the internet came along and we can figure all this out for ourselves???

[farmwife67]

Doctors unfortunately are IGNORANT when it comes to Celiac disease and gluten sensitivity and what happens to us, if we eat celiac. My doctor just told me, "oh you don't want that disease that is an awful diet, it is no way to live life." REALLY?????? I have been eating gluten-free for about 2 months and I don't mind it at all, because I feel soooooo much better now. Just eat gluten-free and forget about diagnosis. Like everyone else said make sure you check all of your pills and lipsticks also.