Biopsy Result At Last. Help Understanding It!

[designerstubble]

Hello again

Received my biopsy results finally. My useless doctor could not interpret them for me properly and glossed over it by telling me I am now confirmed coeliac. Yep! Ok, thanks for that, lovely.

If any one could help... I'd just like to know what degree of damage I have. I have an idea of what it all means but being new just like some other opinions. I was gluten free for 12 weeks before endoscopy (did not reintroduce gluten for biopsy) and am obviously worried to see there is still damage. How much though?

Results:

Microscopy: duodenal mucosa and sub mucosa, some villi show are shorted, surface enterocytes show focal crowding and increase in intraepithelial lymphocytes, crypts are hyperplastic, lamina propia shows diffuse transmucosal moderate increase in inflammatory cell infiltrate.

Duodenum: scalloped

Oesophogus: hiatus hernia

Stomach: normal

Partial villious atrophy consistent with coelic disease. No neoplasia seen.

What's the damage guys? Could this be consistent with someone who's been gluten-free for 3 months? Anyone know what crypts are and what hyperplastic crypts are? (Sounds like a Muse track to me?!!)... Also diffuse transmucosal?

(I've typed it all in word for word, looks like there are some words missing??)

ANY help as always is greatly appreciated, muuuchas gracias.

[mushroom]

I am surprised there is still this much damage after three months of gluten free eating.

1. Scalloped duodenum - definite sign of celiac disease

2. Inflammatory cell infiltrate in lamina propria - sign of early celiac disease although can be caused by other conditions

3. Crowding of enterocytes and increase in intraepithelial lymphocytes - a sign of celiac

4. Hyperplastic crypts - found in celiac disease

5. Shorted (sic) villi - partial villous atrophy - sign of celiac disease.

Hyperplasia is an uncontrolled proliferation of a certain type of cell. Crypts are found on the wall of the small intestine which is covered by villi which are little finger-like projections. When these are "shorted" (I think they meant shortened ) there is damage.

Yes, you are one of us. Welcome to the club

[designerstubble]

Awesome, thanks for that... (You certainly know your stuff. More than my doctor that's for sure!!)

Worrying then that there is still so much damage... ??

Should I have healed then by 3 months? I have been very strict. I have even been dairy free for last 2 months in my attempt heal.

Not sue what to do now... (If my diet doesn't seem to be working?)

Thanks again shrooom!

[mushroom]

No, no, not to worry. It's just that we are so used to people screwing up their test results by failing to keep eating gluten and affecting the outcome, turning positives into negatives; I'm not glad there was still damage, but I am glad there was enough to measure and give you the definitive result.

People have varying degrees of damage and rates of healing; some of us take years to fully heal so I am sure your diet is working. You just don't know how much damage there was before you stopped eating gluten

[designerstubble]

Yes, I see! I did wonder if I'd get a false neg. but to be honest I was SO ill, and my useless doctor and local hospital spent nearly 4 months organising my endoscopy that I had to go gluten-free. (They couldn't organise teddy bears picnic honestly complete waste of space!)....(Secretly glad I did tbh).

Maybe I had total villious atrophy before? And I may have healed a little? I was really worried my biopsy tests would show that now (I thought scalloped duodenum meant villi wipeout)... I would've been really worried then. So I guess this is my starting point. Just have to keep on going! Ugh!

Massive thank you, you guys ought to start chat hong consultancy fees!!! hugs

[designerstubble]

Chat hong??? Should've said 'charging' lol!

Gotta love predictive!

[Skysmom03]

By the sound of it I would say you possibly did have total atrophy. My husband got really sick before they realized what his was. He got do sick they too went ahead and told him to start the diet. When they did his endoscopy two weeks later, he still have total atrophy. The doctor said it was one of the worst he had ever seen. I am not sure he could have lived another three days if he hasn't started the diet. Be thankful your doctors were sure enough to go ahead and let you begin the diet. Most wont suggest that, so they probably already knew the damage was extensive.

[designerstubble]

Wow, your poor husband. I had bouts of severe illness too and extreme anaemia (ferritin 2.4), I was like a zombie. My doctors didn't allow me to go gluten-free, it was a risk I took. Gut instinct. (No pun intended!). They told me to stay on the gluten until endoscopy in 2 weeks. I waited 4 weeks, and watched as my notes were faxed emailed, to various consultants at the hospital, eventually lost and then pretty much ignored for another 3 months. I took the decision at the 4 week point to go gluten-free as I couldn't look after my little boy I was so sick.

I guess it's possible then I really did have villi wipe out. How is you husband now? How long gluten-free? Repeat endo yet? All the best and thanks

[GFinDC]

HI DS,

Scalloping does tend to mean serious damage. But they also said some shortening of the villi, so there must be areas that don't have total villi destruction. Keep in mind the endoscopy can only reach 5 or so feet into the small intestine, really just the beginning of it. There are 17 more feet they can't even seen. Those 17 feet may be in much better shape.

[Skysmom03]

He is pretty good! It has been a year and a half since he was diagnosed. He is finally able to gain weight. He also has type 1 diabetes so we always thought that was part of the reason why he always hovered around 145lbs. Then in April of 11 he got really sick for a week. Throwing up and D. We thought it was a virus. It cleared up but then it struck again on Memorial Day weekend. At that point he was probably 130lbs ( he lost 20 lbs with first illness). This time there wasn't as much throwing up but he went to the bathroom about 20-30 times a day or more. He has every test in the book. He was even scheduled for colonoscopy when finally after three more weeks his diabetic doctor ( this was the lab he had the blood test for the GI doctor) called and said... It looks like it could be celiac. By this time he was down to probably 105lbs. We stopped weighing a week and a half prior when he was at 115. He couldn't eat anything and was basically trying just ensure. He didn't even have to take much insulin because he couldn't eat anything and when he would get low it was forever before it would come back up. We if course had to wait for the GI nurse to call but I had already done my research about celiac. When she called us finally he had pretty much begun to lose his voice. He explained his weight inability to eat anything and she spoke with the doctor and he agreed that he could start the diet. It was very scary... I'll tell you that. To this day I have never understood why they never put him in the hospital. It was terrible because I basically was watching him starve to death. Anyway. With in three days he was gaining weight and thd bathroom issues were 90% better! He had some symptoms ( minor bathroom issues he didn't think anything of, seizures with low blood sugars, and during the year prior terrible smelling gas) but nothing that he would ever go to the doctor about. His GI said he has probably had celiac for many many years! Now he follows a strict diet and weighs 185lbs! He sleeps all night long and doesn't feel as tired.

Oh and we got my son (9)checked too at the advice of my husband's GI. And sure enough he has it too. He has about three years worth of damage according to the ped. GI. He had zero symptoms that were noticeable!

Well that is enough of my book, but it is a detailed story!

[designerstubble]

Thanks gluten-free. Hope you're right, it's quite upsetting to think I am seriously damaged I have a suspicion a am damaged throughout the small bowel as I have pains in various same places. If I get irritated they hurt. I think this is the damage. I dunno, could be wrong but feel quite tuned into it.

Even if I have villi wipeout in some areas it's still possible to heal isn't it?

[designerstubble]

Omg! This predictive on my phone! Sorry for all the typos!

I typed in 'thanks gluten-free' and it changed you to gluten free (which is probably what it stands for?!)

[designerstubble]

What a story Skysmom. I am so pleased he's getting better. It's strange because I had some of it happen similar. Though my bouts lasted 3 weeks each time. And I was going to the toilet 20 times per day. Lost lots of weight. But it came back on in between bouts. Also I had the terrible foul smelly gas for about 2 years before... Lots of tummy rumbling and noises, gas pain but I was never in agony as some on here describe so thought I had irritable bowel like my sister.

Had your husband had a repeat biopsy to check healing or blood work for antibodies repeated?

Also how did they test your son? My 6 year old complains of tummy aches (it's normally gas), and hates things like cereals... And catches every cold available even though we eat really healthily. I'm worried they'll do bloods and they'll come back negative as he has no 'real' symptoms.

Thanks for all your help, it's reassuring when you hear of persons healing up from serious damage. I feel much better as I have been on iron and my levels are going up ok so far. But am still having GI issues... (More now than when on gluten?)...

Any info greatly appreciated, especially concerning testing on your son. Thanks again

[Skysmom03]

On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!

My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!

His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!

Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.

Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! 😄

Any help at all I don't mind helping. My name is Marti and my email is vagal74@aol.com if you'd like to email instead. Either way is good for me.

[Skysmom03]

Oh and I forgot... At my sons first dr appt since his diagnosis ( he goes every three months because of his ADHD) he grew 3cm ( this was a month and a half after his celiac disease diagnosis) and his BMI had jump back to above normal. His BMI had started to drop in the prior year .... Even though he was gaining weight... And the celiac disease explains why!!) she was amazed at the difference a short period of time made in his growth!

[GottaSki]

Hang in there DS

I had total atrophy at dx which had not improved at A YEAR gluten-free. Celiac Doc was stumped. At two years the damage finally stopped getting worse and at three years I finally had an improved marsh scale score - while nit was still in the threes it was improved.

I don't say this to scare you - just remind you that it looks like you have likely already improved - most are all healed within a year - three months for total healing would be very quick - imo and that of my celiac doc.

Hang in there - time without gluten will heal you too.

[GFinDC]

Thanks gluten-free. Hope you're right, it's quite upsetting to think I am seriously damaged I have a suspicion a am damaged throughout the small bowel as I have pains in various same places. If I get irritated they hurt. I think this is the damage. I dunno, could be wrong but feel quite tuned into it.

Even if I have villi wipeout in some areas it's still possible to heal isn't it?

Hi DS,

Oh yes, you can still heal. The villi are normally replaced every three days or so. It's a constant process. If they weren't replaced that often, we would all be in trouble, even non-celiac people. Especially the part right near tehstoamch is ht with stoamchaicd every day. The liver dumps nuetralizing chemicals in the gut to keep it from getting destroyed by the acid. But it's a harsh environment for cells to live in. How long it takes the body (immune system) to stop attacking the cells is the question. That can vary widely.

[designerstubble]

On the hubby, no he hasn't been back to that dr because he hasn't been having any trouble in that area. He's has gained weight and has had no pains or other bathroom issues. In fact, according to my husband, he hasn't had any D since he started the diet. He goes to his diabetic dr every three months ( or more often than that -- he has had T1D for 35 yrs) and he has had extensive blood work each time, and do far no levels of any kind have come back concerning. I don't think they check antibodies though. He has no stomach aches, no gas ( never points anymore in fact), no weird colored poop. He was told that he would heal ( it is obvious he has because he has gained weight he never gained before because he wasn't getting all the calories he needed because his food wasn't being absorbed in his intestines), but that it may be more than a year or more before he was completely healed. He is doing well--- I hope I haven't jinxed him now!

My son- he doesn't look Celiac at all!!! It really was just a chance thing that we had him tested. I could of ignored Glenn's Dr and said 'he has no problems, he's fine', but I didn't. This past summer at his 9 yr physical we ( his ped and I )decided it would be best to check him. She totally agreed that he should be checked regardless of symptoms! She spoke of lymphomas and other problems that arise from untreated celiac, so we had no problems there. His antibody level came back a 25 ( a little above where they start to get concerned-- his GI said they begin to worry at anything over 19)so we were sent to a pediatric GI. He looked at him and said... No he doesn't look celiac. My son is solid not skinny at all. He said because he has some risk factors ( my husband, blonde hair, fair skin ... There would be a chance but he said only 10%). He said that some antibody test are not accurate so he did a more extensive test. This time his levels came back at 65. It was about a month and a half later - I don't know if he ate more gluteny items before that test or just because some time had past but regardless it wasn't a good sign. They scheduled the endoscopy for a week later. That went well. I was scared or course, but it needed to be done. His pediatric GI will not do an official diagnosis without the biopsy. I was no more scared than when he had his tonsils out!! Sure enough he had silent celiac sprue( no obvious symptoms with intestinal damage). As I said the doctor was surprised. He had partial atrophy. The doctor explained the villa like this ( which is probably because he is dealing with kids- adult drs probably font feel the need to explain it as well). The villa are like little fingers. Normal villa pick up the nutrients like fingers would and andorb them into your system. Skylar's villa were "chopped" off a little so they couldn't pick up the nutrients as easily- kind of like if you chopped half your fingers off-- it would be more difficult to pick up things. Basically after that that was it. We started the gluten free diet and we are due up for our first antibody test in February. He requested that his pedatrician do an antibody test every six months for now but said unless we were having issues he would see he wouldn't need to see him again. He has done really well on the diet. He is very concerned about eating things he shouldn't ( I think the drs said cancer one too many times to him). Every once in a while he will eat a snack at his after school program that he fist realize he could have ( like lays BBQ chips) but we talk about it and he now knows those things are off limits. He is 9 and is just learning about what he can and can't have... So there will be a learning curve. He had his Christmas party at school and he are very little ( the room mom told me this) because he was so uncertain about what he really could and couldn't have. This is a good thing I guess but it still made both of us feel bad... We did have things for him, but since I wasn't there to help he didn't want to take a chance. He is a trooper and has been really mature about it. Every once in a while he'll say. I miss burgers, zaxby's , etc. but then we talk about it and what could happen and he is fine!

His symptoms-- he had no obvious ones- if he had stomach aches he didn't realize it ( he didn't know his stomach shouldn't feel that way) no stomach issues serious at least. But once we started the diet he was a bit more perky! We thought he was calming down because he was getting older. So there were symptoms just nothing we could see. There were a couple of other things though... He has ADHD( he's been on meds since he was 5) and he has asthma..., both of those things are symptoms/ side effects of celiac disease. And we recently found out that he has a possibly learning disability in reading ( another side effect) his overall iq is 118 but his reading comp and memory both scored a 92 ( 20 pt difference signals LD--- but the psy at his school doesn't diagnose with just that ( I work at a school and my psy looked at results and said that he does have one--- so right now we are just monitoring and understand that he will probably not be making A's in reading. So I find that interesting. It explains a lot possibly!!

Overall both are fine, my advice to you is to insist on the testing. It is just a blood test. They shouldn't object if they really have an understanding of the disease and its genetic capacity. If they refuse, find another dr that will agree to it. Basically I would accept no. I would go in and insist upon it! I would say I want the test! It is your right to do that. You could always stoop to their level and threaten malpractice if something should happen to your child because they refused to give you a simple test. I know that sounds terrible but whatever you need to say to get those tests done. If that does work go to a pediatric GI ( if you can) and explain your situation. Surely they will test then. I would make sure it is a pediatrician or GI though. Not just some doctor that serves any person that comes off the street.

Well book two is now complete! Please ignore all my mistakes. I too did this on my phone!! 😄

Any help at all I don't mind helping. My name is Marti and my email is vagal74@aol.com if you'd like to email instead. Either way is good for me.

[designerstubble]

Skysmom! Thank you so much. Your husbands story really is quite awesome. Amazing infancy that he has no other problems with food. Was he like this from the beginning? I am wondering if he eats the usual gluten-free stuff available or if he adopted a whole foods diet. I am still struggling with bloats and gas and new allergies and ezcema.

Your son Skylar (fantastic name) sounds so grown up. My son Ezri has lots of allergies (nuts, lentils, fruit, peas, eggs) and we have had a nightmare in our house with food. I will be DEVASTATED if he is also celiac. To also contend with gluten at 5 years old. But obviously he need to be healthy... I am just about to move home and will change doctors (looking forward to this!!)... I will get him tested ASAP after we have moved. I will most definitely insist, the NHS here in UK is a waste of space sometimes (depends on if you're lucky to get a good doctor, hit & miss, most ate useless)... So I will go private if need be.

I just want to thank you again, as your story has been invaluable to be, thank you Marti I will email you when I have moved and settled, I'd love to know more about dealing with a celiac child! Also, why did the ped doc scare your son with the cancer thing I wonder? Seems a bit cruel!! It doesn't happen that often (cancer)?

Anyway, speak soon, big hugs and thanks so very much

Kimmy

[designerstubble]

Hang in there DS

I had total atrophy at dx which had not improved at A YEAR gluten-free. Celiac Doc was stumped. At two years the damage finally stopped getting worse and at three years I finally had an improved marsh scale score - while nit was still in the threes it was improved.

I don't say this to scare you - just remind you that it looks like you have likely already improved - most are all healed within a year - three months for total healing would be very quick - imo and that of my celiac doc.

Hang in there - time without gluten will heal you too.

[designerstubble]

GottaSki, am very glad to hear you are finally starting to heal. Do you have any idea why it's taken so long?? Really interested to know. Where undiagnosed for a long time before? Do you have any other endos coming up or was that a recent one on the marsh scale 3?

I guess 3 months is a lot to ask in terms of complete healing. I'm annoyed I guess that they didn't do what they should have and got me in for an endo within the 2 weeks they promised. Now I don't know how damaged I was to start with... I will have start from now I suppose. When do you think I should repeat an endoscopy to check for healing? Or would I only do that if I continued with gi symptoms?

Do you think that where they stated 'shortening of some villi' that this could mean that some villi are ok (ie not shortened!)... Or am I being optimistic. It's hard really as my follow up appointment is not until April (am I allowed to post derogatory or expletive comments?!)

Thanks gotta ski, and sorry for all my questions

[designerstubble]

GFinDC... That was really interesting. How do you know so much?! Experience I guess? and tons of reading?! So. It's basically down to immune system. And whatever it is that triggers the response in the first place. I've read that pregnancy and the rotavirus are common, does that seem right?

Do you believe stress could be an indicator of how quickly someone could heal?

And why then if my immune system is 'having a rest' from gluten invasion is it reacting to other things instead (ie other foods) lately that it was never troubled by before?

It's like it doesn't know when to stop?!

Have you been diagnosed long, what was your damage like? Are you better now?

Sorry, I can't help myself, I'd love to take you all out for coffee and gossip! (Except I don't drink caffeine now)... (Oh and I live in the UK!)

[GottaSki]

GottaSki, am very glad to hear you are finally starting to heal. Do you have any idea why it's taken so long?? Really interested to know. Where undiagnosed for a long time before? Do you have any other endos coming up or was that a recent one on the marsh scale 3?

I guess 3 months is a lot to ask in terms of complete healing. I'm annoyed I guess that they didn't do what they should have and got me in for an endo within the 2 weeks they promised. Now I don't know how damaged I was to start with... I will have start from now I suppose. When do you think I should repeat an endoscopy to check for healing? Or would I only do that if I continued with gi symptoms?

Do you think that where they stated 'shortening of some villi' that this could mean that some villi are ok (ie not shortened!)... Or am I being optimistic. It's hard really as my follow up appointment is not until April (am I allowed to post derogatory or expletive comments?!)

Thanks gotta ski, and sorry for all my questions

No apologies needed here - we all had many questions similar to yours when newly diagnosed.

We also are all different. For me I went undiagnosed for 43 years - in hindsight I had symptoms all the way back to when solid food was introduced - possibly even when I was on formula - my symptoms became worse over each decade - by my 30s I was in pretty bad shape and at 40 my body was shot.

My Celiac Doc and I were both startled that my first follow up endoscopy at a year gluten-free showed NO improvement - at that point I had had some digestive improvement but all autoimmune type symptoms had worsened.

My most recent endo was last June - even tho it wasn't great news I was pleased that there was finally some improvement.

My celiac doc recommends one follow up endo at a year gluten-free and if removing gluten has brought significant healing he would have stopped there - for me I still have them annually - again I am the exception - not the rule.

Can't remember if you posted your orig antibody tests - I would imagine you will see a significant drop when you have your appt in April.

On my cell so its hard to look back to see if I answered your ?s. - if not Ill post more later.

Hang in there - each day gluten-free is a healing day

[GFinDC]

GFinDC... That was really interesting. How do you know so much?! Experience I guess? and tons of reading?! So. It's basically down to immune system. And whatever it is that triggers the response in the first place. I've read that pregnancy and the rotavirus are common, does that seem right?

Do you believe stress could be an indicator of how quickly someone could heal?

And why then if my immune system is 'having a rest' from gluten invasion is it reacting to other things instead (ie other foods) lately that it was never troubled by before?

It's like it doesn't know when to stop?!

Have you been diagnosed long, what was your damage like? Are you better now?

Sorry, I can't help myself, I'd love to take you all out for coffee and gossip! (Except I don't drink caffeine now)... (Oh and I live in the UK!)

Hi DS,

I've went to Google University for 5 years after I was diagnosed. Also read a lot here at celiac com. I didn't have an endoscopy. I also flunked my celiac blood tests, not positive. I had to wait over 3 months for my appointment at UMD and went gluten-free before that. So my tests were not accurate. But Dr. Fasano said it sounded like celiac to him.

Open Original Shared Link

There is on firm agreement on with causes celiac disease to kick in. Pregnancy is one possible trigger, as are viral infections and other things. Stress is one of the possible triggers. It basically seems like a situation where they just don't know and make up answers that sound right. It's not an easy thing for figure out as people are diagnosed usually until after they have had celiac for quite a while. I know in my own case I developed more obvious symptoms after an office bug that went around one winter. I became lactose intolerant after that bug. I had some symptoms before that, but never had a problem with lactose until then. People have posted before about celiac symptoms hitting them after a pregnancy. People have also posted about their celiac symptoms going into remission during pregnancy. Those people tend to have lots of rug rats! Kidding But the symptoms always start back up after a little while post rug-rat. Pregnancy affects the immune system and kind of tunes it down a notch, so that makes sense.

My symptoms were bad enough in my own opinion, but others had much worse symptoms. I had mental symptoms, GI symptoms, pale complexion, joint pain, couldn't really sleep at night from the pain in my gut, black stool, and bloody stool, allergy symptoms, gum problems, swollen legs and feet, a cat that wouldn't stop meowing, and other assorted fun stuff. I got better on gluten-free but then ran into other food intolerances that kept me feeling off for the first 4.5 years. Last April/may I stopped eating grapes and that seems to have been the last food intolerance piece of the puzzle for me. I have been feeling better since then. Actually feeling pretty much like a normal person in fact. Darned nice change really.

The other food intolerances popping up after going gluten-free is not real unusual for us. There is a theory that celiacs guts don't function the same as other people's as far as the chemical signalling process for allowing things past the gut blood stream barrier. Dr. Alessio Fasano pioneered the research on that issue and the condition is termed "leaky gut". It seems like leaky gut can cause other food intolerances to develop. If you do a search on it Dr. Fasano's info is the most reliable IMHO. Many people have promoted "cures" and treatments for leaky gut since he discovered it. Just be careful because most of them are probably hoakus.

Well, I hope that answers some of your questions. Living in the UK sounds great. I visited their briefly when I was in the military. Saw some real life castles and stuff. Lovely country!

[designerstubble]

No apologies needed here - we all had many questions similar to yours when newly diagnosed.

We also are all different. For me I went undiagnosed for 43 years - in hindsight I had symptoms all the way back to when solid food was introduced - possibly even when I was on formula - my symptoms became worse over each decade - by my 30s I was in pretty bad shape and at 40 my body was shot.

My Celiac Doc and I were both startled that my first follow up endoscopy at a year gluten-free showed NO improvement - at that point I had had some digestive improvement but all autoimmune type symptoms had worsened.

My most recent endo was last June - even tho it wasn't great news I was pleased that there was finally some improvement.

My celiac doc recommends one follow up endo at a year gluten-free and if removing gluten has brought significant healing he would have stopped there - for me I still have them annually - again I am the exception - not the rule.

Can't remember if you posted your orig antibody tests - I would imagine you will see a significant drop when you have your appt in April.

On my cell so its hard to look back to see if I answered your ?s. - if not Ill post more later.

Hang in there - each day gluten-free is a healing day