Confirmed - Blunting Normal

[CamiJ]

I got the results from the pathologist today (following my endoscopy/colonoscopy last week). Everything is normal - stool studies, biopsies, all that blunting the gastroenterologist saw during the exam - all of it. I can't believe it. I don't understand. He did say that what they found was consistent with acid reflux (the one symptom I don't have all the time), and that I should take prilosec OTC. I don't know how that's supposed to help me quit losing weight, stop having headaches every day, not have diarrhea every day, make my joints quit hurting, stop my tingling fingers and toes, make the mind-numbing fatigue and dizziness go away, etc. So, I guess I'm now part of the self-diagnosed gluten sensitive (possibly) group. I'm upset and devastated.....I thought celiac was the answer. It just made so much sense! I know this is not a new question, but is there anything else that can do all of that? I've been sick-to-my-stomach my whole life (I'm 28), it got much worse after I had my baby 9 months ago. Maybe the doctors I've been seeing are right - that I'm just depressed. If I wasn't before, I am now. Where do I go from here?

[Ridgewalker]

I am utterly appalled that they're both saying your "blunted villi" are "normal." It's not normal or healthy for the villi in someone's intestines to be blunted. That is a sign of a big problem.

There's two possibilities here: Your villi were not blunted, and the gastro doesn't know what blunting means or implies; or, your villi were blunted and the gastro doesn't realize that that means your intestines are damaged.

Either way you look at it, he doesn't seem to trustworthy to me.

Just out of curiosity, did you have a blood test done before biopsy?

I would strongly suggest going on a gluten-free diet and see how you do. Getting the opinion of someone else at a completely different facility is also certainly an option if you feel up to it.

[CamiJ]

I am utterly appalled that they're both saying your "blunted villi" are "normal." It's not normal or healthy for the villi in someone's intestines to be blunted. That is a sign of a big problem.

There's two possibilities here: Your villi were not blunted, and the gastro doesn't know what blunting means or implies; or, your villi were blunted and the gastro doesn't realize that that means your intestines are damaged.

Either way you look at it, he doesn't seem to trustworthy to me.

Just out of curiosity, did you have a blood test done before biopsy?

I would strongly suggest going on a gluten-free diet and see how you do. Getting the opinion of someone else at a completely different facility is also certainly an option if you feel up to it.

Thanks for the reply! I've had the celiac panel run twice - by different doctors and different labs. They were both negative (low negative actually). I wish I were certain enough to push for another diagnosis, but at this point I feel like I should just accept it and move on. How many times do I have to be told "no" before I believe it? It could be something else - maybe I'm barking up the wrong tree. I don't know enough to guess what else it could be (I've had labs for thyroid, vitamin levels, metabolic processes, other autoimmune conditions - all normal.) Plus, there are only two places with gastroenterologists in my city (both have about 10 doctors). I don't want to go to anyone in the same office because they will not want to step on my doc's toes, and will likely concur with whatever he said without even looking. I can't go to the other because they do referrals only, and I can't get anyone to refer me. The other doctors I've been to all think that the symptoms are likely due to depression. I've told them I didn't think I would be depressed if I wasn't having headaches every day, but they just say that's the way depression works. It makes everything hurt. Of course, I haven't been depressed my whole life - - and I've never heard of losing so much weight while eating 3000+ calories a day as a depression symptom. But hey, I don't know.... Anyway, I'm on day 5 of gluten free/dairy free. It's going okay, though not as well as I hoped. My brain fog is gone, and I have better energy, but I've still been gassy and I'm still getting headaches. I'm not sure how to test this - do I just stay completely gluten free for awhile (months) and hope that everything resolves? Or do I stay gluten free for another week or so and then try something with gluten in it to see if I react? If I have a problem with gluten, I should have some kind of reaction, right? I don't know how long to give myself to allow for villi healing - I think it's reasonable to assume that I won't have great results gluten free until my villi heal (if they are in fact damaged.)

[Ridgewalker]

It is true that depression can cause terrible physical symptoms, as can anxiety. I was actually struggling with anxiety/depression induced nausea, headaches, and dizziness a couple months ago. An anti-anxiety medication (Vistaril) used as needed helped me immensely.

However!

Depression is NOT going to speed up your metabolism so that you lose weight on 3,000 calories a day!!! That is almost twice as many calories as the average woman needs just to maintain. If you're losing weight on that many calories, that suggests to me that your body isn't absorbing properly... which sure as heck fits with blunted villi.

Furthermore, there are Celiacs I've talked to who have some kind of deficiency... IgA deficiency? ... that caused their blood tests to show up as a low negative, even though they had Celiac Disease. Just thought I'd throw that out there, as something to keep in mind.

If it were me, I would stay on the gluten-free diet for awhile... if you are on day 5, I think I'd give it at least another 3 weeks. And then, as you said, I would challenge it.

You may want to keep track of how you feel on a day-to-day basis in a journal. Writing it down will help immensely- to see any gradual changes that take place over the weeks.

[Worriedtodeath]

Crazy question but did you see the actual surgical path report or the dr's interpertation of that report?? They can be vastly different. The path could have done the biopsies wrong or been a dope himself as ours was. I can't get the dr to order my daughter's biospy to another lab even though we know the path only looked at 1 sample and never examined the other 5. And Mayo Clinic protocol I believe calls for samples to be sent to a path specializing in gastro if samples come back normal but symptoms still suggest Celiac's.

Villi blunting is not normal. Have you consider it could possibly be a milk allergy??? My middle son suddenly just began dropping weight by the ton and was in the bathroom constantly. His Celiac panel was so low that they wouldn't even consider a scope. While he does seem to be somewhat effected by gluten (more of a long term like slow/impaired growth) his weight loss was strictly due to the dairy. Whenever he gets dairy, he stays in the bathroom and gets horrible brain fog. We had to go gluten-free/CF for him and the baby. They both have milk allergy not lactose intolerance. He just gets tired if he gets glutened. While the baby has D if she gets glutened.

Meanwhile, I definitely get bothered by gluten and 20 years ago had all the signs of intestinal damage but no biopsy performed. It took close to 5 months before I noticed any differences in bathroom habits or my general overall health. It takes a lot of time if you have had it for a long time.

I have my whole house gluten-free/CF even though none of the tests have come back positive for anyone. But the relief of so many symptoms and the sudden weight gain and growth of all the kids leads me to believe that all the drs saying no are just wrong. The tests aren't that good. THey are just the best we have right now. Doesn't make them good tests. Just the only way we have right now to dx this.

Stacie

[Ursa Major]

Acid reflux will not cause blunted villi. It sounds like the pathologist the samples were sent to is a moron as well. But if you have acid reflux, that could be caused by celiac disease as well.

Since you have already eliminated gluten and dairy, you might want to add soy to those two. Many people don't feel better until they eliminate all three. Both dairy and soy can cause villi blunting as well, and can certainly prevent healing.

Depression would NOT cause weight loss when you eat 3000 calories a day! It only does if you are too depressed to eat.

While depression CAN cause headaches, it wouldn't cause diarrhea, tingling in extremities, and cause joint pains. It can cause dizziness and fatigue, but so can celiac disease.

Give the diet a good try (several months) to really know if it helps. With all your symptoms, it could take a while. And yes, after a few weeks, eat something with gluten to see if you react.

If you don't get better on the gluten-free, dairy free and soy free diet, you need to look for other causes. It could be Lyme disease, for instance. The symptoms of Lyme and celiac disease are very similar and can be confused. All of your symptoms could be caused by Lyme disease as well.

But one thing at a time. Try the diet route first.

I hope you figure it out despite clueless doctors.

[ravenwoodglass]

Where do I go from here?

You go gluten free strictly for at least a couple of months. You found the right place for info and support while you do so. Blunted villi are not normal and there are so many variables with the biopsy that false negatives are unfortunately all too common.

[kbtoyssni]

I don't get it. What the heck does he think would cause blunted villi if it's not celiac??? You could request your films and take them to a different GI for interpretation. But I'd just go gluten-free if I were you. Celiac can also cause depression - hopefully that will go away after a while of being gluten-free.

[ptkds]

I found this on Medscape:

"Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."

However, based on your history, you should at least try the diet. I agree with the above poster. You should get a copy of the actual path report. Some dr.s believe they know what the diagnosis is (or isn't) even though the path or lab report says different.

Please don't give up. You know your body better than any dr, and you know something is wrong. Dr.s are taught in med school that if a woman comes in with 3 or more symptoms, then treat them for depression. Too many woman are told they are depressed when they really aren't, or they are depressed because of or along with something else going on.

[TrillumHunter]

I'm sure I've read of someone on this board who was told it wasn't celiac only to get the report later that clearly said celiac. I can't for the life of me imagine a physician would do that but it must happen. I agree with requesting the report. I can't believe you would find another gi who would say blunted villi were normal.

The people on this board are great and this board is a wonderful resource.

[CamiJ]

Wow, you guys are great! Thanks for all of the suggestions. I did have my IGA tested, and I'm not IGA deficient. The idea of being intolerant to dairy is a real possibility. My mom says that cow's milk made me sick when I was a baby. I guess at some point I tolerated it better, but then as a teenager I started getting really sick again. I had a bunch of tests run then too without anything more than a diagnosis of IBS and chronis sinusitis. My teachers thought I was anorexic because I had lost so much weight (but I was eating a ton!). I didn't start menstruating until I was almost 16. I was prescribed a bunch of medications that didn't work, and eventually I just accepted that I was supposed to feel ill all the time. In college I finally figured out that dairy was a problem, and when I started taking lactase supplements my stomach problems improved drastically. I still didn't have normal digestion by any means, but at least I wasn't doubled over in pain all the time. Anyway, I'll definitely stay off dairy and see what happens.

Soy is harder. Isn't it in everything too? I guess if I'm going to be serious about this, I should cut the major culprits and go from there. So, what do you eat if you're gluten/dairy/soy intolerant?

About Lyme disease, my GI wouldn't test me for it because I live on the west coast and I have not been travelling east at all. He says it's highly unlikely where I live. I agree though that some of the symptoms seem to fit (mostly because it's another multi-system - bazillion symptom disease).

[neesee]

Did the pathologist say he saw blunted villi? Or was that what the gastroenterologist said he saw. It's always been my understanding that damage is microscopic and can't be seen with the naked eye. That's why the pathologist makes the final diagnosis. Maybe you should get a copy of the pathologist's report.

If it were me, I would give the gluten-free diet a try for a while anyhow. You could be non celiac gluten sensitive. A lot of people are.

neesee

[ravenwoodglass]

Soy is harder. Isn't it in everything too? I guess if I'm going to be serious about this, I should cut the major culprits and go from there. So, what do you eat if you're gluten/dairy/soy intolerant?

Hmm what do we CFSFGF folks eat.

Well I eat: All fruit, fresh or frozen as a single ingredient with no additives, all veggies, fresh and frozen, again with no additives. I eat GFSFCF granolas, my favorite is Bakery on Main with Wegmans rice milk. I drink chocolate hemp milk when I want a glass of something but it is too high in protein for my kidneys to handle on a daily basis. I eat rice, brown, wild and white but I go for organic with no fortification. I eat rice noodles, I like the Thai Kitchen skinny ones they cook really fast and for me they don't have an aftertaste like some of the other gluten-free pastas. I use glutino crackers and Ener-g wylde pretzels, these are the only ones without soy that I have been able to find. I ate a large bag a day when I was trying to gain weight as they are 1000 calories to a bag and they were easy to munch on throughout the day between meals. I eat fish, chicken and beef but not all the time. My favorite easy meal is various bean and veggie stews, I just grab what ever veggies look good out of the freezer and throw them in a pot with some GFCFSF stock or some Delmonte canned tomatoes. Nut butters are good, I look for ones without high fructose corn syrup and do the same with my jellies and jams. I even learned recently how to make scalloped potatoes with rice milk and using Tom Sawyer flour mix. When I want a cake or cookies I pick up a Gluten Free Pantry mix, the chocolate is wonderful and when I want a pizza I use their French Bread Mix. I also use the mix to make a 'flat' bread for dipping into hummus or with a plate of fresh cut up veggies. It is good with just some olive oil garlic and veggies on top also although I won't call it pizza because there is no cheese. I haven't found a cheese replacement that does not have soy or casein unfortunatly.

There really is a whole world of food out there and you won't feel as deprived as you would think you might. We have for the most part grown up with processed foods for convience sake but you will soon realize that many fresh unprocessed foods can be made in less time than it would take you to go to a take out place and cooking fresh doesn't have to mean living in the kitchen. My favorite quick meals are just veggies and some shrimp or a bit of cut up cooked chicken wrapped up in foil with a few spices and heated in the oven for a half hour or so. Another fast one is to use a rice cooker and put veggies and cooked meat in the steamer pan. It cooks itself in no time. Roasted chicken is also a quick and easy meal, just toss into the oven with some veggies around it.

It does take a bit to get used to but once you do and you are feeling better you will be looking at those boxes of dryed out food with labels that read like a chemistry book with distain and not with longing.

[CamiJ]

Did the pathologist say he saw blunted villi? Or was that what the gastroenterologist said he saw. It's always been my understanding that damage is microscopic and can't be seen with the naked eye. That's why the pathologist makes the final diagnosis. Maybe you should get a copy of the pathologist's report.

If it were me, I would give the gluten-free diet a try for a while anyhow. You could be non celiac gluten sensitive. A lot of people are.

neesee

It was also my understanding that blunting damage was microscopic - but I read somewhere else that sometimes the GI can see scalloping, or areas with a dried mud/cracked appearance that then turn out to be atrophied on a closer look. I'm guessing that's what the GI saw. I don't know yet what the pathologist saw, but I did request the report to be sent to me. I've been digging around a bit since my endoscopy, and I don't really know enough to say how it's all diagnosed, but I think that the pathologist looks for lymphocytes (killer T-cells). If there are enough of them in a particular section, the pathologist can then say that it looks like one's own immune system is doing the damage - and I would assume that this particular kind of cell is specific to gluten consumption or they would not be able to differentiate that type of damage from the kind that dairy or tropical sprue or whatever can cause. So, again I'm guessing, maybe the pathologist did see some damage, but it didn't contain the lymphocytes - therefore not celiac. Or maybe there wasn't any damage after all. I'm anxious to see the report for myself.

[CamiJ]

Hmm what do we CFSFGF folks eat.

Well I eat: All fruit, fresh or frozen as a single ingredient with no additives, all veggies, fresh and frozen, again with no additives. I eat GFSFCF granolas, my favorite is Bakery on Main with Wegmans rice milk. I drink chocolate hemp milk when I want a glass of something but it is too high in protein for my kidneys to handle on a daily basis. I eat rice, brown, wild and white but I go for organic with no fortification. I eat rice noodles, I like the Thai Kitchen skinny ones they cook really fast and for me they don't have an aftertaste like some of the other gluten-free pastas. I use glutino crackers and Ener-g wylde pretzels, these are the only ones without soy that I have been able to find. I ate a large bag a day when I was trying to gain weight as they are 1000 calories to a bag and they were easy to munch on throughout the day between meals. I eat fish, chicken and beef but not all the time. My favorite easy meal is various bean and veggie stews, I just grab what ever veggies look good out of the freezer and throw them in a pot with some GFCFSF stock or some Delmonte canned tomatoes. Nut butters are good, I look for ones without high fructose corn syrup and do the same with my jellies and jams. I even learned recently how to make scalloped potatoes with rice milk and using Tom Sawyer flour mix. When I want a cake or cookies I pick up a Gluten Free Pantry mix, the chocolate is wonderful and when I want a pizza I use their French Bread Mix. I also use the mix to make a 'flat' bread for dipping into hummus or with a plate of fresh cut up veggies. It is good with just some olive oil garlic and veggies on top also although I won't call it pizza because there is no cheese. I haven't found a cheese replacement that does not have soy or casein unfortunatly.

There really is a whole world of food out there and you won't feel as deprived as you would think you might. We have for the most part grown up with processed foods for convience sake but you will soon realize that many fresh unprocessed foods can be made in less time than it would take you to go to a take out place and cooking fresh doesn't have to mean living in the kitchen. My favorite quick meals are just veggies and some shrimp or a bit of cut up cooked chicken wrapped up in foil with a few spices and heated in the oven for a half hour or so. Another fast one is to use a rice cooker and put veggies and cooked meat in the steamer pan. It cooks itself in no time. Roasted chicken is also a quick and easy meal, just toss into the oven with some veggies around it.

It does take a bit to get used to but once you do and you are feeling better you will be looking at those boxes of dryed out food with labels that read like a chemistry book with distain and not with longing.

Thanks for all of the suggestions! It doesn't sound terribly daunting. The part that stresses me a little is trying to eat out. I do make a lot of whole foods at home anyway, and if I get my energy back, it won't be hard at all. I never felt that great with all of the processed foods in the first place. I am having some major cravings for ice cream this week, but if I feel better as a result of all of this, I'm sure it will be worth it. Do you make your own stock, or is there a good GFSFCF one that I can buy?

[ravenwoodglass]

Thanks for all of the suggestions! It doesn't sound terribly daunting. The part that stresses me a little is trying to eat out. I do make a lot of whole foods at home anyway, and if I get my energy back, it won't be hard at all. I never felt that great with all of the processed foods in the first place. I am having some major cravings for ice cream this week, but if I feel better as a result of all of this, I'm sure it will be worth it. Do you make your own stock, or is there a good GFSFCF one that I can buy?

Eating out should stress you out but it is not impossible. There are some places with gluten-free menus but it can be harder with doing CFSF also. You may want to post that as a seperate question in the restaurants or coping threads.

If you recently gave up dairy and are seriously craving it then it was the right thing to do. IMHO. You could make a sorbet with fresh fruit. They are really easy and although an ice cream maker helps they are not essential. A fork works also. A recipe should be easy to find.

For stock I usually use either Wegmans or Pacific Foods. Lately though I have just been doing a lot of tomato based ones. I seem to do that in summer.

[ptkds]

If you do get the path report and it says no celiac, remember that the GI is supposed to take somwhere around 10 samples, but they usually only take 2-3. So he may have hit a spot that didn't have much damage. A good GI takes several samples.

Keep us updated! I hope you are feeling better today!

[Rachel--24]

About Lyme disease, my GI wouldn't test me for it because I live on the west coast and I have not been travelling east at all. He says it's highly unlikely where I live.

So the GI is not only ignorant about Celiac Disease....but he has no clue about Lyme Disease as well. Great.

Its absoulutely not true that Lyme is unlikely on the west coast....Lyme is *everywhere*.

Take a look at the Lyme Disease thread if you're interested.

[CCR]

Hi, Cami J, I'm pretty new at this but I was wondering...did you have the bloodwork done that shows if you carry the genes for celiac?

My biopsy was clearly celiac so we began testing my kids. My daughter has low IGA (someone mentioned that earlier) which rendered the normal celiac panel ineffective for her. But the pediatrician had the foresight to also order the genetic test. Since that came back negative and she is asymptomatic, she is very unlikely to ever develop celiac.

So that's how I know about that test. I think it measures something called HLA? I'm sure there is info galore on here about that somewhere. Do you know if you had that test?

CCR

[CamiJ]

Hi, Cami J, I'm pretty new at this but I was wondering...did you have the bloodwork done that shows if you carry the genes for celiac?

My biopsy was clearly celiac so we began testing my kids. My daughter has low IGA (someone mentioned that earlier) which rendered the normal celiac panel ineffective for her. But the pediatrician had the foresight to also order the genetic test. Since that came back negative and she is asymptomatic, she is very unlikely to ever develop celiac.

So that's how I know about that test. I think it measures something called HLA? I'm sure there is info galore on here about that somewhere. Do you know if you had that test?

CCR

No, I didn't have any gene testing. I've heard that EnteroLab does that, but I didn't know if it was something that a regular lab would do. I'll check into getting that lab test done for myself (and possibly my family members). Celiac runs in my Dad's side of the family - he and I both have first cousins with it, his uncle died as a baby of it, and my dad has actually had celiac-like symptoms his whole life. He's never been tested. Anyway, I'm hoping that all of that history (and my own problems) will be enough for me to convince a pediatrician to do a celiac panel on my four kids. I have 3 that are having "iffy" problems. My oldest was a colicky baby - always gassy. He was big (as in tall - high on the charts), but he was always having some issue with food. He used to throw-up randomly all the time. Now he's a pretty irritable, skinny 6 year old. My 4 year old won't eat. He dislikes most foods - as a baby he always cried at meal time. I had to force him to eat. He's small and rather skeletal looking. The pediatrician hasn't been too worried about that but just tells me to butter both sides of his bread and give him whole milk. He tells me most days that his tummy hurts. My baby gets a little rash around her mouth and on her chin when I give her biter biscuits and crackers (all with wheat). She's a happy baby, but a little small. She's also reaching some milestones a little late. She's not crawling yet at 9 months. Anyway, I'd feel better if they were all tested.

[SEAliac]

It was also my understanding that blunting damage was microscopic - but I read somewhere else that sometimes the GI can see scalloping, or areas with a dried mud/cracked appearance that then turn out to be atrophied on a closer look. I'm guessing that's what the GI saw. I don't know yet what the pathologist saw, but I did request the report to be sent to me. I've been digging around a bit since my endoscopy, and I don't really know enough to say how it's all diagnosed, but I think that the pathologist looks for lymphocytes (killer T-cells). If there are enough of them in a particular section, the pathologist can then say that it looks like one's own immune system is doing the damage - and I would assume that this particular kind of cell is specific to gluten consumption or they would not be able to differentiate that type of damage from the kind that dairy or tropical sprue or whatever can cause. So, again I'm guessing, maybe the pathologist did see some damage, but it didn't contain the lymphocytes - therefore not celiac. Or maybe there wasn't any damage after all. I'm anxious to see the report for myself.

Hi, CamiJ,

I just wanted to second what others have said in response to your plea for help -- please get copies of your medical records. The pathologist's report should provide you the information you need. I was a little surprised when I saw mine. There was a picture included of what the pathologist saw under the microscope, photocopied onto the report, which showed the near-totally flat villi. I compared that picture to one I found online (through google and a lot of searching) that showed classic celiac changes. They matched. I wish I had a website address to direct you to --the online picture indicated on the picture what a pathologist looks for (villi or lack of them, crypts or the tissue at the base of and between villi, lymphocytes which show up as lots of ovals spread throughout the crypts). If you find a biopsy picture showing celiac changes, compare it with a normal one. Lay-people should be able to tell the differences after you look closely at them for awhile. I have a graduate degree in immunology but no medical or pathology training. Comparing the pictures is a little like the kids' books where you try to find what's different between two very similar drawings. The text of my pathologist's report described what the pathologist saw in the picture and the other biopsies s/he looked at. It stated how many biopsy samples my GI sent in and how many the pathologist read. I don't have it in front of me now, so I don't remember if it specifically stated "celiac". I think it said something like "changes consistent with gluten enteropathy." Also, there are many types of lymphocytes that may be listed in the report. You may see a reference to macrophages or other cells in addition to T cells. Each type of cell has a different role to play in inflammation. Some of the cells belong there during normal digestion, but they don't belong there in the high numbers that happen during the autoimmune response of celiac disease.

During my endoscopy, my GI took a picture of my scalloping of small intestine and showed it to me (and to his Physician Assistant as a training exercise). That picture matched what I could find online, too. There was some crackling-like texture to the surface of it, but it really just looked like the edges of the intestinal folds had been trimmed with a pair of scissors to have a scalloped design!

I would reiterate one thing that others have said -- if the biopsy/ies weren't taken from places with active inflammation and celiac damage, they aren't going to show atrophy and lymphocytes.

Good luck to you! I hope you feel better with the gluten-free diet. It may take a few months to start noticing improvement, so don't lose heart.

[ravenwoodglass]

No, I didn't have any gene testing. I've heard that EnteroLab does that, but I didn't know if it was something that a regular lab would do. I'll check into getting that lab test done for myself (and possibly my family members). Celiac runs in my Dad's side of the family - he and I both have first cousins with it, his uncle died as a baby of it, and my dad has actually had celiac-like symptoms his whole life. He's never been tested. Anyway, I'm hoping that all of that history (and my own problems) will be enough for me to convince a pediatrician to do a celiac panel on my four kids. I have 3 that are having "iffy" problems. My oldest was a colicky baby - always gassy. He was big (as in tall - high on the charts), but he was always having some issue with food. He used to throw-up randomly all the time. Now he's a pretty irritable, skinny 6 year old. My 4 year old won't eat. He dislikes most foods - as a baby he always cried at meal time. I had to force him to eat. He's small and rather skeletal looking. The pediatrician hasn't been too worried about that but just tells me to butter both sides of his bread and give him whole milk. He tells me most days that his tummy hurts. My baby gets a little rash around her mouth and on her chin when I give her biter biscuits and crackers (all with wheat). She's a happy baby, but a little small. She's also reaching some milestones a little late. She's not crawling yet at 9 months. Anyway, I'd feel better if they were all tested.

Cami these kids definately sound like they might need the diet. IMHO your ped is less than ideal. I was going to use another id___ word there but decided not to be rude. You do need to be aware that the level of false negative blood tests in young children is very high. In countries that routinely test they do it at 4 and again at puberty. I would still go ahead and test though. I would call and talk to a nurse and see if you might even be able to get it ordered over the phone. Then you would just have to bring them in for the stick. If your doctor refuses I would consider finding another ped. Some of the issues like growth stunting and brain and learning issues can not be resolved if they go on too long. Depending on the results of the test the doctors may want to do a biopsy. If you are choosing to put the kids through it then you need to make sure you keep them on gluten. You also need to be aware that the gene testing in the US looks for only 2 of the 9 known celiac or gluten intolerant genes so if you have one of the more obscure ones (like mine) the genes tests may give misleading results. Do be sure to try the diet with them when you are done with all the testing. When all is said and done the results on the diet are IMHO the most reliable form of diagnosis.

[CamiJ]

Well, I got the pathogist's report today, and I have to say that the amount of info these people are willing to give me leaves something to be desired!

On the first page is a summary, and included is the clinical history (which looks like it was probably supplied to the pathologist by the gastroenterologist). Following a short list of symptoms it says, "duodenal flattening." So, the gastro saw flattening.

Here are the descriptions from the patho:

A. 4 biopsies of esophagus - "In fragments of squamous mucosa the basal layer was thickened and the vascular papillae were elongated. Lymphocytes were scattered throughout the epithelium. There were up to 4 eosinophils/hpf. There was no specialized intestinal metaplasia. (Note: the gastro suggested that this was chronic active inflammation due to acid reflux disease - and said to start taking prilosec otc for my symptoms - which I don't have - much).

B. Duodenum biopsies - 6 taken - "No inflammatory process or diagnostic abnormality. The surface epithelium was intact without ulceration or inflammatory pseudomembrane formation. The villi were elongated without widening or blunting. Inflammatory cells were not increased in the lamina propria or surface epithelium. Brunner glands were present in numerous fragments." (Note: Gastro says: "no evidence for celiac disease.")

Anyway, there were no pictures. It sounds like the biopsies were not taken from the flattened areas the gastro saw. Hmmm..... And, no one is questioning why my villi are flattened? Why the gastro saw flattening, but not the pathologist? Why do I have lymphocytes in my esophagus? What the heck is causing all of my other symptoms?! The descriptions appear to have been put together by a P.A., and the whole report was electronically signed out by one of the pathologists (MD). Does this imply that the pathologist didn't even personally review my biopsies?

So, any thoughts about all of this? It's rather less revealing than I had hoped.

[aikiducky]

Actually it does say clearly that your villi in the duodenum, which is where celiac damage would be expected to be, are not flattened, or blunted, and there are no inflammatory cells. In other words at least the places that were biopsied aren't damaged. I realize it's a disappointment if you were hoping for a clear cut diagnosis, but there it is.

There are all kinds of reasons why the biopsies might be negative - there might be damage deeper down in the intestine where they can't reach with the scope, or the damage is patchy and was missed, or you haven't developed damage yet (which would be a good thing, you know).

Or you just simply might not have celiac. Which might also be a good thing. It also doesn't have to mean that eating gluten free couldn't help, there are other conditions where a gluten free diet can be helpful. But you need to keep in mind that it could be something else, if gluten free doesn't help, you might need to look at other possible causes for your symptoms.

Pauliina

[CamiJ]

I agree with you. It is good that they did not find damage. Not having celiac is a very good thing. I guess I was hoping for a little more effort on the part of the gastro in helping me figure out what is going on (it just seemed like he expected me to just be happy it wasn't celiac or cancer - I am! BUT - I still need an answer). And, I would like an explanation from him about the flattened villi he saw that the pathologist didn't see. I disagree with the gastro's statement that the blunting he saw was not of particular concern. I'm concerned about it, and I want to know what caused it, and what I can do to get my life back. I can't continue being sick like this. It's unacceptable to me. Anyway, I asked the gastro about food allergies (before my endoscopy), and convinced him to biopsy the esophagus too. Anyway, I think that the damage found there sometimes happens with food allergies, and he agreed. I eliminated gluten and dairy the day of the endoscopy. I eliminated soy yesterday, and corn today. Today I actually feel really great! I don't know if the gluten-free is finally working, or if the combo of gluten-soy-dairy-corn free is working. Or, maybe this is just a fluke. All I know is, today is awesome! I'm still open to other possibilities, so if anyone knows what else causes celiac-like symptoms, or has ideas what I can do to get well, I'm all ears!