Biopsy: A False Positive?

[mom2lucas]

Hi! Our son was just diagnosed a celiac, negative blood tests, and a positive biopsy. However, since starting the diet 2 weeks ago, we feel he has gotten worst. Is it possible that the diagnosis was wrong? Before the biopsy we were worried that he might have SIBO, because he was on antibiotics and corticoids on and off between January and February this month. We did read on the Internet that SIBO simptoms and biopsy can mimic those of celiac disease. We just want to be sure that he is being properly treated, and don't want to sentence him to a life of dietary restrictions if he's not celiac . Any one knows of a false positive biopsy? Any info would be gratly appreciated. Thanks!

[Joni63]

False negative blood tests aren't really uncommon, but something isn't right if he is getting worse on the gluten free diet.

Is he still drinking milk? Lactose intolerance can cause many of the same symptoms.

I also found this:

Villus atrophy Atrophy of the intestinal villi, the typical finding in coeliac disease. Coeliac disease or gluten enteropathy is not the only cause of villus atrophy, which can be found also in acute gastrointestinal infections, chronic giardia infection, Crohns disease, hypogammaglobulinemia and small bowel bacterial overgrowth, Whipples disease and amyloidosis. NSAID-drugs and abdominal radiation therapy can cause villus atrophy. In children villus atrophy can be found in allergic disorders, as cow milk allergy.

from this website: Open Original Shared Link

What is SIBO?

[Fiddle-Faddle]

I also know of one person who had a positive biopsy and negative bloodwork--turned out, he had a severe bacterial infection that destroyed his villi in the same way that celiac would.

Another possibility is Lyme disease, which is far, far more common than the doctors realize, and NOT always heralded by the supposedly-typical bull's-eye rash. Many people with Lyme say that they had no knowledge of having been bitten by a tick, too.

Just out of curiosity, how old is he, and what is he eating? Perhaps if you could post his typical diet, somebody might recognize something as a potential problem, either in terms of hidden gluten, or another food that is likely to cause symptoms.

As mentioned above, milk will frequently cause major problems for a celiac until the gut is healed, because the enzyme for breaking down the protein in milk is produced in the villi--which in your son's case are damaged. So he should probably avoid ALL milk products for at least a few months, regardless of the cause of the villi damage.

[mom2lucas]

Thanks for the inputs! SIBO is small intestine bacterial overgrowth. My son's almost 2 years old, and so far we have been very strict with the gluten-free diet and CC issues. He drinks lactose free milk and an occasional yoghurt; he tested negative for lactose intolerance and he never really seemed to have any issue with dairy, but we're keeping him low on lactose on the doctor's advice for the time being. His behaviour and sleeping patterns went down hill after the gluten-free diet, and the vomiting and soft, pale coloured stools continue; also his belly is as swollen as usual. We'd like to test him for SIBO and do the celiac genetic testing on him, but the doctor is keen that he's a celiac so won't run any more tests. Anyway, thanks again for your replies.

[gfp]

My son's almost 2 years old

That is the information we needed. Blood tests in young children and toddlers are particularly unreliable for false negatives. Withdrawal symptoms from gluten are not ....

The odds would seem stacked in the biopsy being correct but you will not get firm answers without an extended torture of your toddler ... if its correct. You can keep testing but each time he will need to eat gluten again for an extended period and at that age its a pretty long period since the villi heal faster.

In other words you might spend the next 5 yrs waiting for a positive or perhaps just the next 3 months ?? Meanwhile you are going to have to repeatedly make him ill.

The flip side is that even if its not celiac disease he isn't going to feel any dietary restrictions ... (yourself and his father will be the ones as he's not going to miss pizza and stuff right now... by the time he's old enough to wonder you can think about retesting or hopefully their will be a better way to test without making him sick?

[ravenwoodglass]

Hi! Our son was just diagnosed a celiac, negative blood tests, and a positive biopsy. However, since starting the diet 2 weeks ago, we feel he has gotten worst. Is it possible that the diagnosis was wrong? Before the biopsy we were worried that he might have SIBO, because he was on antibiotics and corticoids on and off between January and February this month. We did read on the Internet that SIBO simptoms and biopsy can mimic those of celiac disease. We just want to be sure that he is being properly treated, and don't want to sentence him to a life of dietary restrictions if he's not celiac . Any one knows of a false positive biopsy? Any info would be gratly appreciated. Thanks!

He isn't very far into the diet, and gluten is sneaky, it can be a lot of things that you wouldn't expect. I would drop all dairy products from this diet for the time being. He may have a problem with casien, the milk protein and not lactose, the milk sugar. For the time being try to give him as little processed food as you can, fresh veggies, fruits, meats, potoatoes etc.

I hope the little guy feels better soon and keep in mind that sometimes we do have a withdrawl period from gluten. During this time we can be more moody than usual but it does pass.

[Fiddle-Faddle]

I don't mean to be a nag, but I think it is important to know exactly what he IS eating in order to help pinpoint what might be going on. It might have nothing whatsoever to do with what he IS eating. But then again, it might.

I have a friend who is a nutritionist, whose 2-year-old son was having lots of tummy issues. Turns out, he was drinking 46 ounces of juice a day. You'd think as a nutritionist, she'd have known better! (And her husband is a doctor--and they are both very intelligent, caring people!) So you can see that even the best and brightest of us can make mistakes.

Which isn't to imply that I think you are making any mistakes! Nor do I want you to post his daily diet so everyone can jump all over you. This is just how I've learned to solve problems--analyze every detail!

You might check out Special Diets, Special Kids by Lisa Lewis and Unraveling the Mysteries of Autism by Karyn Seroussi. Not that I think your child is autistic or anything like that. THe reason I recommend these books is that they both describe really intense withdrawal symptoms, and I thought you'd want to compare your son's symptoms with those discussed in the book. THey also talk about problems with candida, which might be another piece of the puzzle for your little guy.

Hope things improve soon for you!

Oh--given all the tummy issues, I would be EXTREMELY careful with vaccines at this point. As in, don't do any more until he is perfectly healthy, and then, only one at a time. If his villi are damaged, that means leaky gut, and that means a greatly increased likelihood of severe reaction to vaccines.

[bumblemum]

Regarding the doctor not wanting to do any more tests:

Why not? Has there been any testing for the bacterial overgrowth? Why not rule out the things listed by Bellyfat today as causes of villous atrophy from gastrolab.net? Couldn't your son continue on the diet while being tested to RULE OUT the other possible causes? We don't have a celiac diagnosis and was originally thinking it's not our problem, but some odd, but probably not uncommon intolerance, so don't look to me as any kind of authority. Hoping some one here can read this and concur or not. My main advice is below--

We have some big question marks here about gluten & I had to debate w/pediatrician before she would order celiac screens. We are with an HMO. Someone recently ADVISED me to tell the doctor to put in writing that she won't order further testing and why.

Does this make sense to anyone?

Regarding the food: Our pediatrician DID tell me something I didn't know about possible gluten sources--that apple peels can have gluten. I of course didn't take her word for it and researched it, but my main point here is, I concur with Fiddle Faddle-- perhaps post what your son is eating daily. I was hyper vigilant with our toddler and that one possible source was beneath my 'radar.'

[Joni63]

Thanks for the inputs! SIBO is small intestine bacterial overgrowth. My son's almost 2 years old, and so far we have been very strict with the gluten-free diet and CC issues. He drinks lactose free milk and an occasional yoghurt; he tested negative for lactose intolerance and he never really seemed to have any issue with dairy, but we're keeping him low on lactose on the doctor's advice for the time being. His behaviour and sleeping patterns went down hill after the gluten-free diet, and the vomiting and soft, pale coloured stools continue; also his belly is as swollen as usual. We'd like to test him for SIBO and do the celiac genetic testing on him, but the doctor is keen that he's a celiac so won't run any more tests. Anyway, thanks again for your replies.

I agree with some others here that it is early for him in the gluten free journey. I remember my stomach was still bloated for 2 - 3 months and I felt pretty lousy and foggy for at least 1 month. My vision even became really blurred for 2 full weeks.

Sticking to foods that are not processed and keeping away from milk entirely for a while might be a good idea. The damage takes a while to heal and at first many things can set them off.

How do they test for SIBO?

I was actually surprised at all the other things that can cause villi damage. I've heard soy and milk can, but there are quite a number of things.

It also depends on your doctor, some are far more willing to test than others. I have a GI now that only tested my main vitamin levels and since it all looked good told me I was fine and sent me on my way. I went back to my GP almost begging her to help me and she tested more vitamin levels to find out I'm iron and D deficient. I guess the moral is keep digging and fighting for answers. If one doctor won't help you with tests, find one that will.

Good luck to you and your little guy!

[Fiddle-Faddle]

apple peels can have gluten.

I didn't know this. How does gluten get on apple peels?

[ravenwoodglass]

I didn't know this. How does gluten get on apple peels?

I didn't know this either, I do know that a lacto-resin derived from milk is commonly used. Perhaps the ped got the two confused.

[bumblemum]

I am sorry I mentioned the apple peels. I now think that was a false alarm. So sorry. But if anyone else knows otherwise, feel free to correct this! (New post?) Searched this forum, but haven't gotten to the end of pages.

Okay, NOW I CANNOT finding the same things about apple peels and gluten on the internet that I found after our pediatrician said they can have gluten. I remember I read some discussion about it from a forum and was convinced there might actually be gluten in the coating of some apples.

Upon a Google search for 'gluten apple peel coating wax' I found this: www.ifoam.org/about_ifoam/standards/ogs_committees/standards_committee/Inputs/FruitCoatingReview-final.pdf

Read top paragraph of page 3. However, in reading this same article, (and, just for interesting trivia--although it DOES mention whey as a possible item in coatings) 'lac resin' is --IF I read correctly-- from a BUG! Yes, an insect. Lac resin is mentioned later a couple times in the article--including the washing to remove 'bodies'.

BUT- I just did a search of 'gluten on apple peel' and found a discussion on this forum. It was NOT about gluten, but about some people having a problem digesting the peel itself.

***!***Probably more importantly, I just found this from a 1995 Celiac Disease Conference:

Open Original Shared Link ***!***

See paragraph 16 or so, about the inquiries the FDA received about wheat being used in coatings. Or, I've included a piece of it below. I realize this transcript is 'old'--13 years old, but I am thinking now that I don't need to be so anal about peeling apples for the kids.

Here is a snippet of that transcript, underlines added:

'About a year and a half ago, I began to get a series of letters raising concern that the FDA was about to approve a wheat based coating for fresh fruits and vegetables. After the first letter, I wasn't quite sure where the information had come from. But when I got 30, 40, and ultimately about 200 letters, it really concerned us, because FDA had not previously, nor were we currently reviewing any type of petition request for wheat based coating. We had contacted industry; it was also a mystery to industry. They were not using these types of coatings on products. Finally, I was able to trace the source, and I think it was an attempt to head off FDA approving this type of ingredient for fresh fruits and produce. Let me assure you that as of today, there is not any type of request or petition before the agency to include a wheat based coating for fresh fruits and vegetables. If there ever becomes a wheat based coating for commercial use, the agency would then review what conditions are necessary to insure that the product is used safely and would not be a concern for Celiac patients. We recognize that fruits and vegetables are one of the food types that you can eat without concern.' (end of this 'snipet')

oh, and from Q & A after her presentation:

'Question

The second question is, what is the most effective means for us to effect change. We are willing to send letters, but we need to know where to send them, and what type of language to use.

Answer

It's a very complicated answer. Because of the way our law is written, we do have authority in many cases to establish regulations when we have scientifically valid evidence to say that this is a problem. When they ask us to do something contrary to what the Act provides for us, then the mechanism of change would be through Congress. What type of language - very similar to the language in matters I have received. I have been very well educated by members in this community who have written to us, who have described the illness to us. I've also recognized that there is misinformation out there, and when and if possible, we have tried to correct that misinformation, just as in the case of the wheat based coating on fresh fruits and vegetables. Maybe this will help: the Act gives us very general authority to establish regulations to insure safe use of ingredients, to prevent health hazard, to insure that product labeling is truthful and not misleading, and to prevent the use of ingredients that may be harmful to segments of the population. When we have evidence to support that, i.e., the sulfiting issue, yellow # 5, we do not have to go through any type of Congressional mandate to establish regulations addressing those issues. As I said, though, on the other hand, if for instance, there was a need or desire that artificial flavorings declare their ingredients, we can't do that under the current law. Does that help?'

MY SINCEREST APOLOGIES IF I LENT SOME MISINFORMATION AND CAUSED UNDUE CONCERN TO ANYONE!!!

[gfp]

'lac resin' is --IF I read correctly-- from a BUG!

The usual coating is chitin which is the protein insects use for their skeleton. The usual source is crustaceans but this obviously isn''t kosher or halal.

Prior to coating they usually clean the apples, irradiate then coat in candida.

[nora-n]

I have read something about coating on vegetables and fruit and frozen vegetables somewhere, maybe here. something about that it could contain gluten.

About the milk and yoghurt, I would definitely try without any milk or traces of milk. I am very sensitive to milk but I could tolerate small amounts before getting so sensitive to gluten. It happened very quickly.

It is not uncommon for people to get worse on a gluten-free diet, that is because they increase their starch intake and the villi are damaged and cannot handle the extra starch (even though it si gluten-free).

So, try just to feed him meat and vegetables and noe youghurt and maybe no gluten-free bread/ pasta yet. I hae read other stories where the child was getting sick from the gluten-free starch. This may last for a while. The villi take some months to a year to re-grow peoperly in a child, and more time in an adult, or they may never become normal.

If you go over to the SCD diet, they tell you that commercial yoghurt has just as much lactose in it as fresh milk, that is because they add milk solids and the bacteriae die at a certain pH and in the end product there is just as much lactose, which celiacs cannot digest.

My DD gets very tired and sleepy and stomach problems from traces of milk. I do too, and just yesterday I got some traces of milk via gluten-free pasta whcih had gotten some drops of sauce which had some spour cream in it. I got bloated and had to run to the bathroom after a couple of huors.

There is a study from Sweden that shows damage from milk protein in many celiacs, just like from gluten...milk not good even if lactose-free.

Also, there is the SCD diet and the Low oxalate diet for those that do not respond enough to the gluten-free diet.

Open Original Shared Link and the autism websites where they use diet (all autists have horrible bowel problems....)'

nora

nora