Damage To Villi But No Ile?

[KBart]

So I got results back for my daughter's biopsy (not in hand yet but a call from doctor) and she said there was damage to the villi in the dueodeum but not at the level necessary for a diagnosis. She would not characterize it on the scale because she said it isn't celiac. She she there are no increase in IEL's either. What else could cause damage to the villi and a positive blood test but not be celiac? Can there be celiac disease without increased lymphocytes?

[notme]

if you have positive blood test, i would think you have celiac.  false negatives are common, false positives are not.  damage to your villi would certainly confirm this.  what is your dr thinking......  what does that even mean 'characterize it on the scale' does she mean marsh level ?  (i'm sorry, i don't know what ILe's are)  i wonder why she wouldn't think you have celiac.  sorry, maybe go see a different doctor?  this stuff is hard enough to get a diagnosis  

[Gemini]

If you had a Celiac panel that was positive and a biopsy that shows damaged villi, that is Celiac Disease. What might be happening here is that many unenlightened doctors will not diagnose it as Celiac unless it is at least Marsh II damage or higher.  You may be at Marsh I, which just means you caught it earlier, before the really bad damage happened.  There are a few other things that can cause damage to the villi but those will not cause a positive Celiac panel.

 

I would wait until you get the report in hand and post results, if you feel comfortable doing so.  Other than that, I would go gluten free and not look back. 

[KBart]

This is for my 4 year old just to clear it up.

IEL's are the lymphocytes I believe. She said there was no increase in those but there was inflammation and damage to the villi in the duodenum. And yes, when I pressed her to characterize the marsh scale, she would not. She said this may be celiac disease early on. She suggested we contact a dietician and then do a gluten trial later on.

 

One thing that is discouraging me is my daughter is still having very bad stomach pain. We're only about 10 days gluten-free but I thought she would have some relief...at least a little by now. A eczema rash that has been on her eyelids for months cleared up 3-4 days after being gluten-free, and her behavior has made a very big turn around. But the worse symtpom for her, very bad abdominal pain, is still there.

[mamaw]

it  takes  time  for the gut to heal  no person is the  same....it  sounds  like  your  daughter  is making progress  in the right direction just  keep her 100%  gluten-free  24/7  &  don't look back....I agree  with  the others sure  sounds  like  celiac... for  your  son....if  you are not  happy  with the  results  take  your  medical copies  &  go  to another  doctor  for  another  opinion... not all doctors  knows or understands  celiac or  ncgs....

[KBart]

it  takes  time  for the gut to heal  no person is the  same....it  sounds  like  your  daughter  is making progress  in the right direction just  keep her 100%  gluten-free  24/7  &  don't look back....I agree  with  the others sure  sounds  like  celiac... for  your  son....if  you are not  happy  with the  results  take  your  medical copies  &  go  to another  doctor  for  another  opinion... not all doctors  knows or understands  celiac or  ncgs....

Thank you.  I only have the one daughter suspected of celiac disease. She is the one with the eczema and pain, so no son. 

 

I already called to make another appointment with another GI doctor.  I'm praying I can get her in quickly. My FIL is also a pediatric infectious disease specialist so I'm going to see if he can show the pathology report to one of his colleagues or call in a favor.

[mamaw]

KBart---  sorry about the son  thing I was typing & speaking to my son at the same time...or  else  I do  have a little   esp  maybe  you are going to have a son  

[Christina's.My.Name]

Definitely sounds like Celiac to me, mind you I am a total newbie, but I have been doing COPIOUS research in the last couple months so know just enough to be dangerous.  I would suggest finding a doctor or nurse practitioner who practices FUNCTIONAL medicine, they seem better versed in these matters and do better testing. I would also have your daughter get the blood test that has the food allergy panel with around 100 or so different foods. That way you know exactly what she is reacting to due to cross-reactivity such as soy/dairy/certain nuts etc because in my reading it seems as long as those irritants stay in her diet, her body will continue to react, her inflammation will not heal, and she will still has troubles like the tummy pain. I am not Celiac like my mom, but rather NCGI but also react to sesame, dairy, almond, and a few others. Also , have you got her on a probiotic and enzymes. There are also some other supplements you might want to look into to help heal her gut faster. Also were all of her vitamin levels check such as B12, folate, ferritin/iron, etc? If these are low, especially the B12, she won't heal well either. There are also genetic tests for MTHFR gene to look for whether she is able to absorb the folate and if not she will need to take 5-MTHF for methylation. I hope any of that helps, and if anything is incorrect anyone please feel free to jump in! I'm becoming so passionate about this stuff! Good luck with your daughter, you're a great mom to be so thorough!

[KBart]

KBart--- sorry about the son thing I was typing & speaking to my son at the same time...or else I do have a little esp maybe you are going to have a son

No worries!

[KBart]

While her stomach pain hasn't subsided, she seems to have an increase in thirst at times. And she's barely eating. Are these possibly detox symptoms? I'm wondering if I should get her sugar and thyroid tested in case it is something else causing the increased TTG.

[kareng]

While her stomach pain hasn't subsided, she seems to have an increase in thirst at times. And she's barely eating. Are these possibly detox symptoms? I'm wondering if I should get her sugar and thyroid tested in case it is something else causing the increased TTG.

 

 

I definitely would get those tested, too by an MD.

 

I would skip the expensive and scientifically unproven "food sensitivity" tests recommended above, too.   

[mamaw]

KBart. I've  always  heard  thirsty could  be a sign of  diabetes  . I would  get  thyroid.  glucose A1C other  work  done  .B-12 Vit D CBC the  total  series...e  you  find  answers soon

[bartfull]

Christina, because you asked so nicely for folks to correct you if you got anything wrong, I'm going to point out a couple of things.

First, that blood test for allergens isn't really all that reliable, and it is for allergies, not intolerances. If she is having breathing problems or hives after eating something she is having an allergic reaction, but the stomach pain is more of an intolerance reaction.

 

The other thing is, you mentioned cross-reactivity. In ALLERGIES there is such a thing, but for intolerances there is not. I know some websites will claim all kinds of things like coffee for instance, will cross-react and give gluten symptoms. That whole idea has been debunked by the experts at places like the University of Chicago Celiac Center and people like Dr. Fasano. They are the leading experts on celiac and they know what they are talking about.

 

Now, that being said, many of us are intolerant to things like soy or corn, but not because they are cross-reactive. We simply can't tolerate them. When I first started I reacted badly to corn, soy, blueberries, sweet potatoes, and even lettuce! I wasn't healed yet and I had trouble with all kinds of foods. It took years before I could add them back to my diet. If they were truly cross-reactive I would never have been able to add them back. And here's the thing - I've only been glutened twice since I first started, but both times I lost corn again for a little while. And I know why - because I damaged my gut and my damaged gut couldn't handle corn. Once I healed again (in a couple of months) I got it back again.

 

I hope you're not offended by the "corrections". Stick with this site and you'll get to understanding more and more about celiac and NCGS. That's whi I'M still here - to help others the way the folks here helped me, and to continue learning.

[StephanieL]

 I would also have your daughter get the blood test that has the food allergy panel with around 100 or so different foods.

 

That is a very bad idea and not one that is supported by the AAAI and other medical societies.  They recommend ONLY testing for foods to which one has seen a reaction.  The high rate of false positives on these tests make them only a guideline AFTER there's been a reaction. 

[Christina's.My.Name]

Christina, because you asked so nicely for folks to correct you if you got anything wrong, I'm going to point out a couple of things.

First, that blood test for allergens isn't really all that reliable, and it is for allergies, not intolerances. If she is having breathing problems or hives after eating something she is having an allergic reaction, but the stomach pain is more of an intolerance reaction.

 

The other thing is, you mentioned cross-reactivity. In ALLERGIES there is such a thing, but for intolerances there is not. I know some websites will claim all kinds of things like coffee for instance, will cross-react and give gluten symptoms. That whole idea has been debunked by the experts at places like the University of Chicago Celiac Center and people like Dr. Fasano. They are the leading experts on celiac and they know what they are talking about.

 

Now, that being said, many of us are intolerant to things like soy or corn, but not because they are cross-reactive. We simply can't tolerate them. When I first started I reacted badly to corn, soy, blueberries, sweet potatoes, and even lettuce! I wasn't healed yet and I had trouble with all kinds of foods. It took years before I could add them back to my diet. If they were truly cross-reactive I would never have been able to add them back. And here's the thing - I've only been glutened twice since I first started, but both times I lost corn again for a little while. And I know why - because I damaged my gut and my damaged gut couldn't handle corn. Once I healed again (in a couple of months) I got it back again.

 

I hope you're not offended by the "corrections". Stick with this site and you'll get to understanding more and more about celiac and NCGS. That's whi I'M still here - to help others the way the folks here helped me, and to continue learning.

No I'm not offended at all!   I had read that the food tests (at least the one I did) uses 2 different tests, one for IgE which  tests for food allergies like the ones that have an immediate response like eat a peanut and your throat closes up whereas the IgG tests for antibodies food intolerances or sensitivities, the ones that build up and more slowly cause damage like gluten slowly causing leaky gut and inflammation and all the other lovely things we experience. Is this not correct?

When I was referring to cross-reactivity, maybe I used the wrong term. I guess what I meant was you can have other foods other than gluten that you are intolerant of or sensitive to and with continued consumption, your gut will not heal so you will continue to have symptoms. The mechanism by which this occurs (the protein resembles too closely that of gluten, it has some sort of property your body does not like, it wears the wrong shade of lipstick, etc) I suppose is less important to me. So my questions would be, are you saying the test results I received, that I tested positive for an intolerance to certain things such as wheat, dairy, etc are completely inaccurate?

When you say you are intolerant to corn but not because it resembles protein, why then do you think you are intolerant to it? And in case the tone is mis-read, I am genuinely asking as I am trying to learn as much as possible, and also maybe I can rationalize my way into only going gluten-free as opposed to cutting the harder things like dairy, nuts, etc

 

Thanks for the info Bartful. OP I hope you don't mind, hopefully the info will be useful to you as well?

 

And to Kareng, I understand the tests can be expensive, but if they are useful in leading you directly to those foods you should avoid (for whatever reason as stated above) wouldn't it be worthwhile as it seems as great starting point for elimination rather than trial and error? Or do you simply discount the tests completely as a marketing ploy where they just randomly indicate positive results without any validity. Again, in case tone is mid-read, I am truly asking!

 

Thanks, Christina

[kareng]

No I'm not offended at all!   I had read that the food tests (at least the one I did) uses 2 different tests, one for IgE which  tests for food allergies like the ones that have an immediate response like eat a peanut and your throat closes up whereas the IgG tests for antibodies food intolerances or sensitivities, the ones that build up and more slowly cause damage like gluten slowly causing leaky gut and inflammation and all the other lovely things we experience. Is this not correct?

When I was referring to cross-reactivity, maybe I used the wrong term. I guess what I meant was you can have other foods other than gluten that you are intolerant of or sensitive to and with continued consumption, your gut will not heal so you will continue to have symptoms. The mechanism by which this occurs (the protein resembles too closely that of gluten, it has some sort of property your body does not like, it wears the wrong shade of lipstick, etc) I suppose is less important to me. So my questions would be, are you saying the test results I received, that I tested positive for an intolerance to certain things such as wheat, dairy, etc are completely inaccurate?

When you say you are intolerant to corn but not because it resembles protein, why then do you think you are intolerant to it? And in case the tone is mis-read, I am genuinely asking as I am trying to learn as much as possible, and also maybe I can rationalize my way into only going gluten-free as opposed to cutting the harder things like dairy, nuts, etc

 

Thanks for the info Bartful. OP I hope you don't mind, hopefully the info will be useful to you as well?

 

And to Kareng, I understand the tests can be expensive, but if they are useful in leading you directly to those foods you should avoid (for whatever reason as stated above) wouldn't it be worthwhile as it seems as great starting point for elimination rather than trial and error? Or do you simply discount the tests completely as a marketing ploy where they just randomly indicate positive results without any validity. Again, in case tone is mid-read, I am truly asking!

 

Thanks, Christina

 

 

Not if they don't work.  I think that is what some of us were trying to say politely.

 

And there is no "real' Scientific evidence that some protein from a random food resembles a protein from gluten.

 

Not trying to be un-friendly - just blunt

[Christina's.My.Name]

Not if they don't work.  I think that is what some of us were trying to say politely.

 

And there is no "real' Scientific evidence that some protein from a random food resembles a protein from gluten.

 

Not trying to be un-friendly - just blunt

But what do you mean they don't work? Are you saying the foods that they tell you that you are sensitive to, you are not truly sensitive to?

 

I get it that you guys don't believe in cross-reactivity, but I'm asking what is the root cause then of being intolerant of other things than gluten?

 

I don't think you're being unfriendly but I think more elaboration would be helpful in your answers rather than just stating your beliefs or opinions since someone like me who is new to all this has not read the myriad articles and books etc that you guys have, so I would love to be able to read directly from where you are getting your belief. For example I tried looking for where the CR thing was debunked by the U of Maryland or Dr. Fassano and I couldn't find that anywhere so if there is something to cite from specifically I would love to read it.

 

Thanks again!

[bartfull]

The testing for celiac and the testing for dairy intolerance are valid tests. But there is no reliable way to test for intolerances to other foods. The only way to find out if you're intolerant to things like soy or corn is to do an elimination diet. It takes forever and after a while you look at eating as nothing more than a necessary bodily function rather than something pleasurable. (At least I did.) But given time you will find out what triggers your symptoms and given even more time, you may well get back most of the offending foods.

 

Check the website cureceliacdisease.org and if you really explore the site you will get the very best and most up-tp-date scientific info on celiac, testing, NCGI, and lots of other stuff.

[kareng]

But what do you mean they don't work? Are you saying the foods that they tell you that you are sensitive to, you are not truly sensitive to?

 

I get it that you guys don't believe in cross-reactivity, but I'm asking what is the root cause then of being intolerant of other things than gluten?

 

I don't think you're being unfriendly but I think more elaboration would be helpful in your answers rather than just stating your beliefs or opinions since someone like me who is new to all this has not read the myriad articles and books etc that you guys have, so I would love to be able to read directly from where you are getting your belief. For example I tried looking for where the CR thing was debunked by the U of Maryland or Dr. Fassano and I couldn't find that anywhere so if there is something to cite from specifically I would love to read it.

 

Thanks again!

Just a start.  I use this site because it is easy to use.  All the big Celiac Centers in the US do interact with each other.  You can find that sort of info by looking for panels and research they have done together.

 

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

 

Open Original Shared Linkd-for-gluten-sensitivity

 

Someone else who is more familiar with allergies might be able to give you more links.

 

 

I have seen that there are many different reasons someone could be intolerant to a food - like FODMAPS, sensitivities to things like sulphite, histimines etc.  They may not have figured them all out yet.

[kareng]

Sorry KBart - this thread has really gone off on another tangent.  Sometimes people will post things that need clarifying and I hope that info will help you in some way.

[bartfull]

There was once a beloved scientists on this board who passed away. We miss her tremendously because she was knowledgable and compassionate and just a wonderful person. Here is what she had to say about additional intolerances:

 

Personally, I think our development of food intolerances has more to do with Fasano's zonulin work than cross-reactivity. We have abnormal intestinal permeability and more foods make it across the intestinal epithelium to the lamina propria where the intestinal immune cells are than happens in normal people. That combined with a high level of inflammation and immune cells in the intestine means more food is presented to the immune system as foreign and we develop a wider variety of food IgA antibodies. Here. This is a great article.
Open Original Shared Link

There is also growing evidence of gut flora and mucous layer production problems in people with celiac. This supports the "leaky gut" idea.
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link

[Christina's.My.Name]

Thank you both Bartfull and Kareng-I will thoroughly read all of that info. I can't believe all of this stuff I never knew and just happily ate my way into being 30 lbs underweight and at risk of sudden death from a 6.4 hemoglobin. I am truly enjoying all this learning! Again, sorry to KBart for hijacking!

[StephanieL]

This may help with those other food allergy tests you mention Christina.  They are NOT scientifically proven which is why people jump all over them (because they are expensive and not useful and VERY OFTEN lead to people having highly restricted diets for no reason!)   The only way to "test" for an intolerance is to go off the food then reintroduce it. (Technically, this is the only way to test 100% for an IgE or anaphylactic allergy as well- we often talk about gold standard tests, the biopsy is considered the gold standard for Celiac where a food challenge is for food allergies.)

 

Open Original Shared Link

[KBart]

No worries on the derail. I just have to go back and read all these links now! Every little bit of info helps...