Had My Endoscopy- So Confused

[Momma Bear]

Hello all. A little recap to my story- went to a new doctor last month, mentioned I stopped eating gluten a few months prior. He ran bloodwork (assuming it would show nothing) and was surprised to find really high antibody levels (endomysial, gliadins) as well as B12 deficiencies and almost non detectable levels of vitamin D. He told me point blank I had celiac and to eliminate all gluten from our home, but wanted me to have an endoscopy to assess the damage and evaluate my esophagus.

I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?

[Roda]

If your diagnosed celiac you can not eat any gluten. It is autoimmune and by continuing to eat just a little will keep the antibody reaction happening. Your GI is stupid to say that a little would be fine.

[tarnalberry]

If you have celiac, you cannot have gluten, period. You could call the GI back for clarification, but his statement, taken as-is, is wrong.

[GottaSki]

Wow. I am sorry for the confusion your endoscopy caused. You can not have a little gluten without causing further damage. I agree call your GI and have him explain the statement.

You were deficient in nutrients and you had positive antibodies even after removing gluten - the antibodies would likely have been much higher had you been tested before removing gluten. Remain gluten-free compliant and re-test your nutrients and celiac panel at either three or six months from the last blood work - your antibody numbers will likely decrease and your nutrients will improve - nutrients can take longer to bounce back - you may need to supplement.

That your villi is not completely flat is great news - either you have been healing or the damage was not yet severe or possibly a combo of both.

[GottaSki]

And I would report that nurse's comments to the nursing supervisor - she needs additional training on many levels. How dare she say that you are wasting their time. I've had endos twice since diagnosis at my doctors request and will likely have more in the years to come - at least until my small intestine shows improvement - that nurse has no idea what she is talking about.

[Takala]

I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?

No, you can learn from even bad experiences.

Your antibodies should drop on a gluten free diet, but... it takes time, and there is NO guarantee that they will drop completely in six months, especially if you are a newbie and not used to ferreting out cross contamination. False positives are rare. Damage from reflux is a symptom of celiac. Celiac auto immune reaction damages the lining of the intestines so the little points that are supposed to stick up end up going "flat." Not completely "flat" is good. If even the GI doctor after the scope and before they look at the slides for the biopsy says you have visible to the naked eye damage and that you have celiac.... you have celiac. Positive blood test and positive biopsy = standard diagnosis criteria by many. A little gluten is not "fine." Eliminating as much gluten as humanly possible from your diet is your goal, so you are exposed to as small amount of parts per million (microscopic amounts) as possible.

People vary in sensitivity. Some people can tolerate more potential of cross contamination than others, for example, they can eat something made in a facility which processed wheat or was tested to 20ppm gluten free, other people have to avoid much processed food, even if gluten free authentic, and do better with that which tests 5 ppm or less, in order to heal up. Others have to go further and get rid of gluten bearing cosmetics and toiletries, for example, I had to ban gluten containing lotion from the house, because I was getting served a glass of ice water which had been bare - handed by my spouse who had just used lotion after a bath, and there was enough residue to get me. I also got rid of shampoos and conditioners with wheat and oats, and changed to a mineral make-up, because I don't want the residue all over my skin and towels, and I fiddle with my hair a lot, and I have very, very sensitive skin. Coconut oil makes a great conditioner, if you are just now thinking "oh, no!"

Who knows what the GI doctor actually meant as it is not clear whether he meant potential cross contamination is "fine" or a small serving is "fine," either way, gluten, for you, is not "fine," anymore. Your primary care physician is correct, no gluten.

Nurse has a bad attitude and should be re educated, but I wonder how many patients this doctor has made sick, or delayed healing of, if he's telling them a little gluten is okay.

[mommida]

If you are still going through testing, you need to continue eating gluten. The testing is to find damage caused from eating gluten. It is not worth going through testing procedures when you are on a gluten free diet. IMO Some patients with Celiac do continue having endoscopes to monitor damage. (there is a condition, "Celiac sprue" where damage has never fully healed from the gluten free diet)

There seems to be medical professionals who believe that fully gluten free can not be managed by most patients. This may have led to the confusing statement from your doctor. You need to avoid gluten for the rest of your life. Cross contamination, and accidents will happen during times. You have to make the best decisions on where and what to eat, because you do have to eat something.

You may now find that you have a severe reaction when getting small amounts of gluten, even if you had no symptoms before.

[1desperateladysaved]

I am glad that you got such a definative answer with antibody and biopsy agreeing. I hope your worst health fears won't come and you will be healed. I hope you will absolutely have no gluten and your family will rally with you.

Diana

[MitziG]

Your bloodwoork was positive. Your endoscopy still showed some flattened villi even after 6 mos gluten free. You can't get much more positive than that.

Your GI is a dope however. You can not eat any gluten. None nada zilch. Ok?

[Momma Bear]

Thank you for the replies. I have no intentions of eating any gluten at all, ever! I am just so floored that a GI doctor could be so uneducated! I will not be going back to this office and I plan on talking to my primary care about everything that happened. I am taking this seriously because I have two young children that need a healthy mommy! I am having bloodwork done to re-check my antibody and vitamin levels in a few weeks and my primary care said we'll see where we go from there.

[beachbirdie]

If you have not already done so, I would get copies of the endoscopy report and read it for myself. There are some people here who can help interpret if you felt like sharing it.

The doc saying the "intestine was not completely flat" is not very useful except to acknowledge that there IS some damage! If you have damage, and you have antibodies, there is no doubt that you have celiac.

The doctor who told you a "little gluten is fine" is an absolute moron. As another poster said, even a little bit of gluten sets off an autoimmune reaction (NOT to be confused with allergy) that can last for MONTHS.

Then there is that nurse who said you were wasting her time. What a piece of work! She should be reported to superiors. Arrgghh.

Hope you'll be feeling really well soon!

Ugh. Dumb doctors.