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Villi Question

ebrbetty

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ebrbetty Rising Star
ebrbetty
Posted

hi guys, my Dr just called, said everything looked good with the colonoscopy and the only think she found in the endoscopy was a ulcer.

she did the celiac blood work after being gluten free for 7 months, and said only one of the labs was elevated. [a different dr did my original celiac blood work 7 months ago]

after speaking with her i am more confused then ever...last week she told me the blood work looked good, mostly normal, with the exception of the one slightly elevated panel so, I'm doing great on the diet.

today on the phone she said that the villi looked normal during the colonoscopy so she doubts I have celiac..that there was no damage..I reminded her that I've been gluten free for 7 months and she said "that could be why the villi looked normal, maybe you've healed it, but I'm not sure you really are celiac"

shes driving me nuts with this..

does anyone know if villi can heal and look normal after 7 months gluten-free?

here are the results from the blood work 2 weeks ago, I would appreciate any help explaining them to me and giving me your opinion, so many of you here understand this disease much better than I do

thank you very much, I'm about to loose my mind and give up completely

my results are as follows:

IGA..281 [normal range 81-463]

tTG AB,IgA 16 [normal range 0-19]

Gliadin IgA 12 [normal range 0-19]

Gliadin IgG AB 23 [normal range 0-19] slightly high

thanks again

Betty

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LKelly8 Rookie
LKelly8
Posted

IMHO - You have celiac disease. I haven't the slightest idea what your doc is talking about. :blink: Is this your first scope? Doc's due consider a positive scope the "gold standard", some won't diagnose celiac without it.

Yes your villi could heal in seven months - your villi could have healed after two months!

ravenwoodglass Mentor
ravenwoodglass
Posted
hi guys, my Dr just called, said everything looked good with the colonoscopy and the only think she found in the endoscopy was a ulcer.

she did the celiac blood work after being gluten free for 7 months, and said only one of the labs was elevated. [a different dr did my original celiac blood work 7 months ago]

after speaking with her i am more confused then ever...last week she told me the blood work looked good, mostly normal, with the exception of the one slightly elevated panel so, I'm doing great on the diet.

today on the phone she said that the villi looked normal during the colonoscopy so she doubts I have celiac..that there was no damage..I reminded her that I've been gluten free for 7 months and she said "that could be why the villi looked normal, maybe you've healed it, but I'm not sure you really are celiac"

shes driving me nuts with this..

does anyone know if villi can heal and look normal after 7 months gluten-free?

here are the results from the blood work 2 weeks ago, I would appreciate any help explaining them to me and giving me your opinion, so many of you here understand this disease much better than I do

thank you very much, I'm about to loose my mind and give up completely

my results are as follows:

IGA..281 [normal range 81-463]

tTG AB,IgA 16 [normal range 0-19]

Gliadin IgA 12 [normal range 0-19]

Gliadin IgG AB 23 [normal range 0-19] slightly high

thanks again

Betty

You didn't see some big wig celiac doctor in Boston did you? What you were told sounds just like what my DD was told when she saw the person she saw in Boston. Supposedly this doctor had her original endo report and blood work but told her she didn't have celiac and the first doctor misdiagnosed. I am so angry I could spit about that. She has used this as a reason to go off her diet, I hope you don't. Yes you have probably healed. Do you feel better gluten free? If so stay that way.

jerseyangel Proficient
jerseyangel
Posted

Hi Betty :D I don't know what the doctor was talking about, either! After being gluten-free for 7 months, I wouldn't expect to find any damage. The villi can heal pretty quickly--of course that dosen't mean that we feel better right away! ;) Anyway, I can't be of any help with the blood test result--I never had the blood testing. I'm glad to hear that the colonoscopy came back normal--I know you were worried about that. Please don't give up--I think your results are very encouraging! :)

ebrbetty Rising Star
ebrbetty
Posted
  • Author

thank you kelly, raven and patti..she made me crazy, all I've been doing is crying and thinking I should just start eating gluten again.

the Dr I saw was in Needham, she works with BI in boston and the neddham campus.

when I first met with her I did not tell her I was also Dx with IBS, I didn't want her to be able to use that as a way out of my stomach pain, she did say "you have one of the worst IBS cases I've seen along with the ulcer, slow gastric empting and possible celiac. [again she questioned the normal villi]

this was my first colonoscopy

I hope someone can read my results, I would appreciate that very much

thanks again guys :D

p.s. Patti..love your picture, your as pretty as you are kind!

ok off to call my mom

see you later

hugs Betty

Lymetoo Contributor
Lymetoo
Posted

Glad to hear the colonoscopy was OK. I just got my report back on the polyp they found....A-OK.

But.....I thought they couldn't see villi with a colonoscopy????? :unsure: I thought that was only by endoscopy??

If I'm wrong, then I feel pretty stupid, as I didn't tell my dr to check that closely.

Aerin328 Apprentice
Aerin328
Posted

Betty,

I'm in the same situation of Dr. induced confusion and frustration over my results. Everything for me was normal except for the Gliadin IgG (which was 57, normal is <20 I guess). I had one doctor say, "That number has to be in the hundreds for you to be celiac." Another said, "Oh yes, that is definitely high enough. Anything over 20 means you have it." And a book I read last night said none of the numbers mean anything conclusively and a intestinal biopsy (which I refuse to endure) is the only answer.

So I'm afraid I don't have an answer for you, but know that you are NOT alone out there with your confusion!! Don't give up on your hard work!

Don't let the doctor harm your resolve! (I'm talking to myself here in the same sentence, as I am also wavering from all the various incongruous information!)

Christian

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ebrbetty Rising Star
ebrbetty
Posted
  • Author

thank you both for the support, Not having a 100% positive result is so frustrating :angry:

If I was one of the "lucky" celiacs that go on this diet and feel a whole lot better I would not be so stressed out over weather or not to continue to be gluten-free, but I'm still dealing with stomach pain everyday, not as bad as before gluten-free, but pain everyday sucks and the Dr told me I will always be in pain

CDFAMILY Rookie
CDFAMILY
Posted

Betty,

I know how frustrating this can be!!!

Most doctors can NOT see damage with an endoscopy exam unless they have the latest technology and they know what they are looking for. That is why they should take 6-8 biopsies in different areas and even then, they can miss the damaged area.

After 7 months gluten free and you still have a high normal tTG's I would be highly suspicious of Celiac but for sure I would say Gluten Sensitive. I was told by a respected and progressive doctor that if you had tTG's in the blood then you have Celiac. That is why entrolab is such a good idea as it can catch the problems before they enter the bloodstream. Probably the Gastro's don't want you to know this as it will definitely put a crimp in their business.

Do you have low normal ferritin or low lymphocytes? How about your vitamin B, D and K...have they been checked? They are signs of malabsorption and malnutrition.

I would not be too concerned about winning over your doctor but would be concerned about your well being, health and happiness....after all you only see her (doctor) a few times a year but you look in the mirror every day and when you look you want to see someone that feels good.

I do not have one doctor that knows how to treat me, but I do have a wonderful primary doctor who is learning along with me and knows all the other medical info from other areas that I do not know. My neurologist has me email him with the latest info because he never had a patient that presented with Celiac like I did...(probably never had a celiac patient at all...LOL)

So, my advice would be to wait for the biopsy report...if it is negative then make your choice of staying on the diet and believing in it or get tested thru entrolab or do a gluten challange if you need to have the medical diagnosis.

ebrbetty Rising Star
ebrbetty
Posted
  • Author
Betty,

I know how frustrating this can be!!!

Most doctors can NOT see damage with an endoscopy exam unless they have the latest technology and they know what they are looking for. That is why they should take 6-8 biopsies in different areas and even then, they can miss the damaged area.

After 7 months gluten free and you still have a high normal tTG's I would be highly suspicious of Celiac but for sure I would say Gluten Sensitive. I was told by a respected and progressive doctor that if you had tTG's in the blood then you have Celiac. That is why entrolab is such a good idea as it can catch the problems before they enter the bloodstream. Probably the Gastro's don't want you to know this as it will definitely put a crimp in their business.

Do you have low normal ferritin or low lymphocytes? How about your vitamin B, D and K...have they been checked? They are signs of malabsorption and malnutrition.

I would not be too concerned about winning over your doctor but would be concerned about your well being, health and happiness....after all you only see her (doctor) a few times a year but you look in the mirror every day and when you look you want to see someone that feels good.

I do not have one doctor that knows how to treat me, but I do have a wonderful primary doctor who is learning along with me and knows all the other medical info from other areas that I do not know. My neurologist has me email him with the latest info because he never had a patient that presented with Celiac like I did...(probably never had a celiac patient at all...LOL)

So, my advice would be to wait for the biopsy report...if it is negative then make your choice of staying on the diet and believing in it or get tested thru entrolab or do a gluten challange if you need to have the medical diagnosis.

thank you so much for the reply and your opinion on my bloodtests

I have no idea about my vit. B,D or K..I do not take any vitamins as they always upset my stomach.

the high tTg could that mean I'm getting glutened by mistake or more to the fact that it has only been 7 months gluten-free?

I mentioned to my Dr that she should take more than one biopsy, but she disagreed with me and only did the one.

you've all been great and I appreciate the feedback

Betty

CDFAMILY Rookie
CDFAMILY
Posted

Are you serious....she only took ONE biopsy...she needs to talk to Dr. Green....he said you need at least 6 or 8 and you could still miss the damage!

ravenwoodglass Mentor
ravenwoodglass
Posted
thank you so much for the reply and your opinion on my bloodtests

I have no idea about my vit. B,D or K..I do not take any vitamins as they always upset my stomach.

the high tTg could that mean I'm getting glutened by mistake or more to the fact that it has only been 7 months gluten-free?

I mentioned to my Dr that she should take more than one biopsy, but she disagreed with me and only did the one.

you've all been great and I appreciate the feedback

Betty

Have you eliminated gluten from toiletries, cosmetics, vitamins and checked all your OTC and prescription meds? Not eliminating the gluten from these sources can keep you sick. IMHO you should also find a new doctor.

Aerin328 Apprentice
Aerin328
Posted

After reading the above post I checked my personal hygiene products for anything gluten-suspicious but all the ingredients look like they're in a different language. What to look out for in shampoo, toothpaste, deodarant etc. that could be gluten???

jerseyangel Proficient
jerseyangel
Posted

Hi Christian--The majority of the time, the ingredients will be in plain English. The most common ones in personal care products are wheat starch, wheat germ oil, etc. and oat. Natural flavorings should be checked out--any time you're in doubt, call the 800 # on the label. If it's a long list, I read it from the top down and again from the bottom up to make sure I don't miss anything :blink:

penguin Community Regular
penguin
Posted

They may also sometimes use the scientific names for wheat and oats.

Trictum Vulgare - Wheat

Avena Sativa - Oats

ebrbetty Rising Star
ebrbetty
Posted
  • Author
They may also sometimes use the scientific names for wheat and oats.

Trictum Vulgare - Wheat

Avena Sativa - Oats

thanks

I know my makeup is gluten-free. my shampoo and conditoner and soap looks ok, but we don't eat those so either way I'm safe.

Aerin328 Apprentice
Aerin328
Posted
They may also sometimes use the scientific names for wheat and oats.

Trictum Vulgare - Wheat

Avena Sativa - Oats

Wow, those tricky marketers. ;) Thank you!

skoki-mom Explorer
skoki-mom
Posted
hi guys, my Dr just called, said everything looked good with the colonoscopy and the only think she found in the endoscopy was a ulcer.

she did the celiac blood work after being gluten free for 7 months, and said only one of the labs was elevated. [a different dr did my original celiac blood work 7 months ago]

after speaking with her i am more confused then ever...last week she told me the blood work looked good, mostly normal, with the exception of the one slightly elevated panel so, I'm doing great on the diet.

today on the phone she said that the villi looked normal during the colonoscopy so she doubts I have celiac..that there was no damage..I reminded her that I've been gluten free for 7 months and she said "that could be why the villi looked normal, maybe you've healed it, but I'm not sure you really are celiac"

shes driving me nuts with this..

does anyone know if villi can heal and look normal after 7 months gluten-free?

here are the results from the blood work 2 weeks ago, I would appreciate any help explaining them to me and giving me your opinion, so many of you here understand this disease much better than I do

thank you very much, I'm about to loose my mind and give up completely

my results are as follows:

IGA..281 [normal range 81-463]

tTG AB,IgA 16 [normal range 0-19]

Gliadin IgA 12 [normal range 0-19]

Gliadin IgG AB 23 [normal range 0-19] slightly high

thanks again

Betty

Hi Betty,

Just wanted to chime in and say that yes, you can heal in 7 months. I had complete villious atrophy last August, and in mid June of this year I had only minimal blunting, which qualifies as significant improvement.

ebrbetty Rising Star
ebrbetty
Posted
  • Author

thank you lori

Guest Robbin
Guest Robbin
Posted

Hi Betty, I'm sorry but I think your dr. is full of malarky. You most definitely can heal that quickly. That is why they say do not go gluten free for any amount of time prior to tests. As far as the blood work goes, many, many people have the negative bloodwork-you could be deficient in IgA or IgG antibodies, especially if you have been sick for a long time. One poster on the forum recently was saying she was genetically deficient and so was her son. (I forget which thread) This would make the blood tests negative. Please continue to care for your health by staying gluten-free, perhaps you have other intolerances that are causing some of the problems with recovery. Dairy affects me as bad as gluten, so maybe there is another intolerance raising its ugly head with you too. I hope you feel better soon. Take care :) .

ravenwoodglass Mentor
ravenwoodglass
Posted
thanks

I know my makeup is gluten-free. my shampoo and conditoner and soap looks ok, but we don't eat those so either way I'm safe.

Please don't think that because you don't eat your toiletries, lotions etc. that they are safe. Call the makers and find out for sure and for certain. It is a common misconception that since we don't injest these products that they don't effect us and that misinformation keeps many of us ill for a long time after diagnosis.

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