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Chelsea_A

13 Months Old, To Biopsy Or Not?

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I am so happy to find so many moms with an amazing amout of knowledge. I need to decide if I should put my sweet baby through an EGD and biopsy.

My boy is 13 months old. He is breastfed. Solids introduced at 6 months. Diarrhea started at 7 1/2 months. At 9 months we stopped dairy and had some improvement. He was diagnosed FTT and has tested positive for fecal fat. Diarrhea comes and goes. Lately he has pretty normal BM's with an occasional slimy, mucus BM. His BM's sometimes smell weird. He often has 4-5 BM's per day. His appetite is poor to good depending on the day. He is 3 percentile for weight.

Developmentally he is ahead. He is happy and oh so sweet. We have no know hx of celiac on either side of the family.

I have not taken him off gluten yet. But our diet is pretty low gluten.

His GI Dr says we need to do the biopsy. His labs were inconclusive. I have felt like it's a good ideal because I want to know if this is really it. I want to know if this is a life long diet. When he's older I want to be ablt to tell him that I am sure he nees to be gluten free. After a lot of reading on this forum I just have so many questions.

What information do you have on diagnosing toddlers? I'm hearing that the biopsy is not very helpful when kids are under five. Any more info about that? What are the chances that the GI Dr will want to repeat the biopsy in the future?

I have an apt on monday with the GI dr to discuss the EGD so I'm trying to get all my thoughts, questions, and info together.

Thanks so much for your help.

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This is an extremely personal choice. It can have grave results or it can be a snap. The problem lies in the fact that if the biopsy comes back negative , what will you do? Will your Gi support a gluten free trial?? Will he want to do other testing?? What will he do if it comes back negative???? And if he tells you well this is a classic text book case and I am fully positive it will come back positive ask him where he gets his info from because you would like to see it. And if he comes out of the biopsy and says it was probably Celiac and the biopsy comes back negative, what will he do?? biopsies in children have a high false negative rate. What is the course of action if it is negative and all the other things he is looking for is negative as well? what will he do with negative results?

I wish we had nailed our gi a little harder about what he would do if it was neg because everyone was so so so sure it was Celiac. hands down. No doubt. That one negative biopsy caused everyone to say no way it could be Celiac. No way. 4 months of a gluten free diet insisted upon by me and carried out by me without dr support has at least changed our ped's mind. I'm glad we did all the testing we did because it leaves no doubt that our daugther's problem is gluten. COuld be Celiac in it's earliest form or could be some yet unnamed issue with gluten. Either way we can choose to feed our daughter gluten until we get a positive biopsy or we can try the diet without a positive biopsy and see if she improves and gets well. She got well. Incredibly well.

This is hard one. At least if you do the biopsy, all other issues in the stomach and upper gi are ruled out.

Good luck

Stacie

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Agreed it is very hard and personal choice to do a biopsy on a young baby. The previous poster has excellent questions that I wish I had thought of at our appt. From my personal experience, load up on the gluten adn go for the biopsy and gene test. My daughter practically stopped growing at 9 mths. At her 2 yr check up she was falling off the growth charts and no dr was concerned. I had to fight for the testing and biospy. The biopsy was inconclusive. The gene test was positive. The Dr yelled at me for putting her on gluten-free/CF diet - but she has grown so much and changed so much and she reacts to gluten every time. I have no doubt she is a celiac; however, all of the Drs question the Celiac diagnosis before they look for any other possible problem she is having. So I really wish I could say "Yes, she is biopsy positive just like me, now lets address the current issues."

If it helps, the biopsy is painless and pretty quick. Due to the age, your childs biopsy should be done in a hospital.

Best of luck!

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My opinion differs from the above posters'.

I don't think it's a difficult decision, at least,not at this point.

A biopsy on a 13-month-old will have a very good chance of being negative, regardless of whether the baby actually has celiac. There is a high false-negative rate to begin with, plus the child's diet has been low-gluten, so the chance of major and consistent villi damage is low.

If you load up on gluten, and gluten turns out to be the problem here, then you will have done damage to your baby in the effort to find a "firm" diagnosis. That's like taking someone who is likely allergic to peanuts, and feeding him lots of peanuts, saying, "let's wait until the patient has an anaphylactic reaction before we agree that he's allergic to peanuts." Doctors often seem to forget their mandate to "first do no harm."

The anesthesia needed for the procedure IS risky, and yes, a very, very small percentage of babies die from the anesthesia. There is also no research on long-term neurological effects from the anesthesia. Your doctor will probably laugh this off, but then when you get to the actual procedure, you will have to sign a document saying that you have been warned of all the risks.

What are the results of the bloodwork? "Inconclusive" usually means at least one positive marker--which would mean that your baby is producing antibodies against gluten. That's pretty conclusive, in my book. I would ask on Monday for a copy of the bloodwork results.

Is the doctor considering any other diagnoses besides for celiac?

If you want to "rule out" celiac, the most conclusive test is dietary response. If all symptoms go away with the eliminatin of gluten, there's your answer.

If, however, there is no change, then you do need to keep looking for answers.

But the doctor certainly has a conflict of interest here--he stands to make thousands of dollars from one 45-minute procedure, while a simple diet change could provide a firmer diagnosis, at no risk to the baby, no cost to you (and no profit to the doctor).

Given the age and symptoms of your baby, I would also do a lot of research on vaccines at this point, as they are definitely linked with autoimmune disorders. A good place to start is www.nvic.org. Most of the other sites you find are funded by the pharmaceutical industry, as are the AMA and the FDA, so major conflict of interest there.

I'm not saying you should never get any vaccines. But you can spread them out so he only gets one at a time (MUCH safer), and you can turn down or delay those that are aimed at diseases for which he is not at risk, like Hepatitis B (transmitted through sexual contact and contaminated needles--come on, how many 13-month-olds need this?).

If he has not yet had an MMR, please consider delaying this until he is a little older, and be aware that, although 2 are supposedly required, 1 is supposed to give lifetime immunity (the second is required only because 5% of the kids who get it don't develop immunity). It is a simple and inexpensive blood test to see if he is already immune. Who knows, maybe breastfeeding confers lifetime immunity to measles, mumps, and rubella? That's never been studied, as the pharm industry only funds studies that can gain them profits....

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The reason we found it to be a hard decision was because we had an exteremely sick child with no doubt very negative bloodwork and had 3 drs screaming this was Celiac and the biospy was to rule out any possibilty of anything else before commiting her to a gluten free diet for life. It was hard to look at them all and say No, we'll do the diet and then see." Their reasoning was sound. If we don't do the biopsy and the diet doesn't work, we no longer had any room to maneuver. My baby was on going into the hospital if we had even fed her gluten for another month. So that is why it was hard. We were all ready at weekly weight checks and the ped calling us to see how this week was going. Things were bad and I was stupid, wore out, and desperate. I took advise from the people who were to do us no harm.

HOWEVER!!! We should have asked the questions I posted earlier. Everyone was so sure it was Celiac that the Gi was stunned it came back negative and basically washed his hands and dismissed us. Had I known before hand his course of action in the face of a negative biopsy, I would have told him to screw it. (instead I called him a very bad type of idiot and fired him 12 days after the biopsy) Since at the biopsy, basically everything was ruled out. we proceed with the plan of going gluten free only to be told when the negative biopsy came back to not do that anymore. When his course of action made her sicker, he said keep her on gluten and just remove wheat along with dairy. Come back in a year and let's see if full blown Celiac had developed.(????)

The ped was desparate and said gluten free was all she had left. Everything else was normal. And my baby was not going to make it another year. We went gluten free because it was the only time our daughter was well and that's what we needed. In hind sight knowing all this we would not have done the biopsy. And at 13 months I would refuse anyway unless my baby was on death's door. In fact I did refuse at 13 months and only did the biopsy after trying wheat under the allergist's care several months later.

Truth is if you have a child that you suspect Celiac and you can afford health wise to take a couple of months to see if the diet makes any difference, then do the diet. It can't hurt. If you are still breastfeeding, you will have to be gluten free as well. If it isn't gluten, then your child will continue to worsen and you'll know you don't have a choice on the biospy. Just nail them down on what they will do if negative. Then ask why not do that now?

Fiddle-Faddle's right. If he started D from eating peanuts, they would jerk that out of his diet asap. And at this age negative is more likely than positive and the risks of the procedure is high.

Stacie

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Hi there,

A lot of us parents have been down this road. Our case is a little different, because my son's blood work was pretty conclusive. (4 tests in the ELISA panel, and not one of them was remotely within normal ranges) But the first GI we saw insisted that the hospital would not "treat" for celiac without the biopsy. By the time we saw the first GI, we had been gluten-free for over a month and I knew that there was no way we were putting my baby back on gluten.

So, we switched GI's and told them that we were NOT going to put him back on gluten for the sake of a "diagnosis" and he said... "that's totally fine. I'm pretty convinced he has celiac and we'll treat him accordingly." Our assumption is that if my son wants to do a gluten challenge when he's older, he is welcome to. But he gets so sick every time any CC happens, I really doubt he'll want to do that.

Now a year later I have some perspective on it. The biopsy itself is not too big of a deal. My husband ended up having one based on his semi-positive but fairly inconclusive bloodwork. (everything was negative on the biopsy and 2nd round of bloodwork for my husband) I think there is a greater risk of putting your child in a car than there is a risk of something happening to them from the anesthesia. But if I had it to do all over again, I'd probably still forgo the biopsy, not because the biopsy is so terrible, but because I knew by then that gluten was poisonous.

If your child really has celiac disease, a six month gluten free trial will probably give you the definitive answer you were looking for. Then maybe give him a cheerio and see the yellow poop the next day, and there's your answer. the only advantage I see for a biopsy, versus a gluten free trial is that if there is some other GI issue that they will be more likely to catch it while they're in there with a camera.

This is like any other parenting decision. You've got to make it from your gut.

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Then maybe give him a cheerio and see the yellow poop the next day, and there's your answer.

I nearly cried reading that line. Even my husband thought I was nuts for screaming over "cheerios" poop. I can tell everytime she sucks down a cheerio - the poop is very distinctive! Thanks for stating that line! It helps reassure me we are that group of seronegative Celiacs.

Stacie

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I nearly cried reading that line. Even my husband thought I was nuts for screaming over "cheerios" poop. I can tell everytime she sucks down a cheerio - the poop is very distinctive! Thanks for stating that line! It helps reassure me we are that group of seronegative Celiacs.

Stacie

I so agree! Our ped. kept saying that unless she has diarrhea that she didn't have celiac. I kept saying....her poop is yellow!! Thankfully after a positive blood test and a positive biopsy she was gluten free. Yes, the poop turns yellow after an accident. So true.

As for the poster... We decided to go for the biopsy with our 4 year old. I am glad we did since she didn't have the typical celiac symptoms because we now have no doubt in our minds.

However, with that being said we are foregoing a biopsy with our 15 month old. She is showing the telltale signs and we are in the process of doing a gluten challenge and awaiting enterolab results. Her blood work was negative and that is typical at her young age. Our GI doctor said we caught my 4 year old at an early stage (patchy damage to the villi). So therefore it took 4 years before she had patchy damage. I don't want to wait 4 years of watching my daughter fall off the weight chart to await a biopsy.

I would definitely ask the GI doc if he actually has ever seen damage at that young of an age before.

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I would definitely ask the GI doc if he actually has ever seen damage at that young of an age before.

I think it is irrelevant whether or not HE has ever seen damage at that young an age. Even if there is NO visible damage to the villi, if gluten is the problem, it can be inducing the immune system to attack anything else in the body, including the developing brain.

Also, there can clearly be problems with absorbing nutrients, even if villi damage is not obvious--and that, too, affects the developing brain (and everything else).

I'm sorry, but I'm SO tired of doctors playing around with the futures of babies, simply because they've never seen nor heard of the varied presentations of celiac. I realize that they weren't sufficiently taught about celiac in med school, but maybe if some of them actually LISTENED to the parents, they'd realize what's going on. :ph34r:

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I think it is irrelevant whether or not HE has ever seen damage at that young an age.

This is so true! And it brings up what will most likely be the doctor's next statement (should biopsy miss any damage)...."Well, we can rule out celiac for sure". Celiac can NEVER be ruled out by tests, it can only be ruled in. Yet, most GI doctors will rely solely on the biopsy result and for the next 15 years when your son continues having problems....they won't want to test for Celiac again because they already KNOW that he doesn't have it. Many here have been told their child doesn't have celiac because the biopsy was negative even though bloodwork was positive. Damage can be patchy. A more relevant question would be to ask how many samples will the GI take in order to dx celiac. If it's under 4 samples...forget it. Odds are very high that if there was damage, they'd miss it. And once all those tests are complete and everything comes back "normal", you'll get the standard responses of "OH, it's toddler IBS". Chances are, they'll throw some antibiotics at it and tell you to just cope until the "phase" passes.

I'm sorry, but I'm SO tired of doctors playing around with the futures of babies, simply because they've never seen nor heard of the varied presentations of celiac. I realize that they weren't sufficiently taught about celiac in med school, but maybe if some of them actually LISTENED to the parents, they'd realize what's going on.

Spoken like a true veteran of this disease. ;) There is a huge problem with doctors not listening to their patients as well as pediatric doctors not pulling in the very valuable observations/assessments of parents who live with the patient 24/7. We're seeing this on the autism front as well where pediatricians are swearing up and down that vaccines have nothing to do with regressive autism even though parents have videotape of their normal child for months and months up until the day of a vaccine and then you see the child IMMEDIATELY regress into autism. FYI, I don't believe that vaccines are the only or sole cause of autism. But after my experiences in getting my dd healthy, I seriously question a medical professional who proclaims something definitive about a disease (like it cannot possibly be vaccines) when no cause has been found yet. We simply do not know.

With autism, precious little is known and yet, with a dx rate of 1 in 150, pediatricians are now screening everyone. This bothers me to an extent because there has been no word on screening for celiac....a disease which affects 1 in 133. It bothers me even more that many autistic kids seem to respond well to the Gluten-free Casein-free diet and yet I don't think there has been a significant link found between celiac and autism when it comes to biopsy. There is something going on that goes beyond villi damage. And doctors need to be made aware of this so that they can help their patients.

To the OP, the decision to biopsy or not is yours to make. The only real advice I would offer is this....no matter what the result...ALWAYS follow up with a month-long trial of the gluten-free diet. There is no better diagnostic tool out there if your child is exhibiting symptoms.

Personally, I think the biopsy is most useful when it comes to cases where the patient is asymptomatic.

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Our GI doctor said we caught my 4 year old at an early stage (patchy damage to the villi). So therefore it took 4 years before she had patchy damage. I don't want to wait 4 years of watching my daughter fall off the weight chart to await a biopsy.

I would definitely ask the GI doc if he actually has ever seen damage at that young of an age before.

Even if HE has ... it dosn't mean the OP's baby will.

13 months is so young

Solids introduced at 6 months. Diarrhea started at 7 1/2 months.
So he only has 6 months eating Gluten...

He also still has mostly YOUR immune system... if you are positive he will likely be positive....if he will be positive he might not have enough of his own yet to show ....

Meanwhile if he gets a negative biopsy what will you do? Potentially poison him on the results of a shaky and inaccurate test?

I agree 100% with fiddle-faddle...

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"But the doctor certainly has a conflict of interest here--he stands to make thousands of dollars from one 45-minute procedure, while a simple diet change could provide a firmer diagnosis, at no risk to the baby, no cost to you (and no profit to the doctor).

Given the age and symptoms of your baby, I would also do a lot of research on vaccines at this point, as they are definitely linked with autoimmune disorders. A good place to start is www.nvic.org. Most of the other sites you find are funded by the pharmaceutical industry, as are the AMA and the FDA, so major conflict of interest there.

I'm not saying you should never get any vaccines. But you can spread them out so he only gets one at a time (MUCH safer), and you can turn down or delay those that are aimed at diseases for which he is not at risk, like Hepatitis B (transmitted through sexual contact and contaminated needles--come on, how many 13-month-olds need this?).

If he has not yet had an MMR, please consider delaying this until he is a little older, and be aware that, although 2 are supposedly required, 1 is supposed to give lifetime immunity (the second is required only because 5% of the kids who get it don't develop immunity). It is a simple and inexpensive blood test to see if he is already immune. Who knows, maybe breastfeeding confers lifetime immunity to measles, mumps, and rubella? That's never been studied, as the pharm industry only funds studies that can gain them profits...."

You certainly have every right to post your opinion...after all, that is the point of this forum, right? However, it is entirely irresponsible to be posting incorrect and frankly dangerous medical information.

A doctor who performs a biopsy does not stand to make "thousands of dollars." The doctor, him or herself, in the end, will make a couple hundred. I don't think that's unreasonable.

Vaccines are not linked to "autoimmune diseases." Thimerasol, which used to be used in vaccines, has been linked to autism only. Thimerasol has NOT been used in routine childhood vaccines since 2001. The ONLY vaccine which OCCASIONALLY contains thimerasol is the flu vaccine. There are multiple different flu vaccines - most doctors are not using one containing thimerasol - if he or she does, request that you be given the other one.

There is absolutely NO reason to get vaccines spread out over time and not to give them together. In fact, many vaccines are in the same syringe so the child only needs to be "stuck" one time. It is important to get vaccines at the times they are scheduled (at least within 6 months of the scheduled date).

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I'm sorry, momandgirls, but the adjuvants in many vaccines HAVE been linked with autoimmune disorders. See www.nvic.org, www.mercola.com, and http://www.healing-arts.org/children/vacci...r.htm#Adjuvants

The reason to spread out vaccines is because there is no research telling us that multiple vaccines are safe--and there are indications that they are not, such as the Wakefield study.

How can you say it is important to get the vaccines on the recommended schedule when some of those vaccinations are for diseases most children are NOT at risk for (hepatitis B), and others are literally unnecessary for 95% of the population (the second MMR, for example)????

While vaccines containing thimerosal were not supposed to be produced after 2001, they were in common use until at least 2003, as pediatricians were allowed to use up all that had already been produced. Anyone who claims that the fact that autism rates have not decreased since 2001, thinking that that

exonerates vaccines obviously doesn't realize that thimerosal was in full use until at least 2003.

My understanding is that most doctors are using the flu shot with thimerosal, as the one without comes in a single-use vial and is much more expensive (and insurance companies don't cover that one). If it came in a multi-use vial, it contained thimerosal as the preservative.

I understand the theory behind vaccines--but I have learned too much to accept the US medical community's take on it.

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A doctor who performs a biopsy does not stand to make "thousands of dollars." The doctor, him or herself, in the end, will make a couple hundred. I don't think that's unreasonable.

My Gi dr between the insurance check and my lump payment made around $800. The hospital were it was performed made between insurance and my payment $2300. The anesthesilogist (sp?) made $438 or something close to that. Once the biopsy came back negative, the gi's suggestion involved repeat biopsies until one came back positive. He also had a day each week in which he scheduled all biopsies. I know that makes thing easier but he performed basically 4 an hour. I feel very confident in saying it was much like a puppy mill in theory and practice. His interest was more in many repeated procedures until a definitive dx could be reached than in helping my daughter get well. After all Celiac treatment involves no repeat business once dx. Even the ped was horrified that any dr would reccomend the treatment plan he did. Good or bad right or wrong many GIs operate this way as he was and is the best in my state and comes highly qualified and respected hence the 3 month wait to get in and the month and half as first call on cancellation.

There is absolutely NO reason to get vaccines spread out over time and not to give them together. In fact, many vaccines are in the same syringe so the child only needs to be "stuck" one time. It is important to get vaccines at the times they are scheduled (at least within 6 months of the scheduled date).

said from one whose children were not harmed by vaccines. It's easier to hold down an infant than to hold down a two year old. Praticality played a part in developing the schedule when to vaccinate as well as the belief that giving shots to an infant will keep them from remembering that when they are older and big enough to be hard to deal with. Isn't it amazing that shots stop around 18 months and don't pick up again till school age? Research the very beginnings of vaccines and those are reasons listed to perform them so early so to not cause undue pain or trauma. NOT because it was beneficial to the health of the infant. Very few of the vaccines are actually neccesary for the infant's health. Maybe older but not the infant. AND my ped herself has skipped some vaccines, delayed others until they could be given as one shot because we are not in the risk groups, are not in school or daycare and thus unlikely to be involved in an epidemic of some of those things. The vaccine schedule is a tool to be used by knowledgable drs and parents. NOt to be followed out willy nilly and applied across the board.

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Just because no study on vaccines (which are usually funded by the very people who benefit financially from them) has officially found that they cause autoimmune diseases doesn't mean that they don't.

The fact is that NO LONG TERM STUDIES have ever been done on vaccines! I wonder if people getting things like Alzheimer's, Lou Gehrig's Disease, Multiple Sclerosis and others at ever younger ages has anything to do with it?

After all, if you destroy people's immune systems by all those vaccinations, you should expect that they should end up with autoimmune diseases.

The immune systems of infants are not fully developed yet. Which is why to a great degree they still rely on immunity from breast milk for the first year of life. To assault those tender immune systems with multiple pathogens will WEAKEN their immune systems, not strengthen them.

There has never been any proof that vaccines actually work. In fact, it has been proven that they often make you more susceptible to the illness you have been vaccinated against.

A few months ago there was an outbreak of measles in schools around here. It was the fully immunized kids that brought it in, and almost all of the children who then got the measles were the ones who had been immunized.

What was the recommendation from the health department? "Make sure you immunize fully for measles to prevent another outbreak!" Hardly logical, in my opinion.

The logical thing is, to let kids have childhood illnesses, so they will REALLY have lifelong immunity.

Sorry for my rant.

As for the original issue, I agree that biopsies on children under six are very unreliable and in the majority of cases (unless the child is already nearly dead) yields false negatives, even if the child has celiac disease.

If you really want a paper stating that your child is gluten intolerant, go with Enterolab. And start the gluten-free diet immediately, because Enterolab testing is still accurate up to a year after going gluten-free.

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Vaccines are not linked to "autoimmune diseases." Thimerasol, which used to be used in vaccines, has been linked to autism only. Thimerasol has NOT been used in routine childhood vaccines since 2001. The ONLY vaccine which OCCASIONALLY contains thimerasol is the flu vaccine. There are multiple different flu vaccines - most doctors are not using one containing thimerasol - if he or she does, request that you be given the other one.

There is absolutely NO reason to get vaccines spread out over time and not to give them together. In fact, many vaccines are in the same syringe so the child only needs to be "stuck" one time. It is important to get vaccines at the times they are scheduled (at least within 6 months of the scheduled date).

I would have to strongly disagree with these statements.

As of THIS YEAR thimerosal has not been completely removed from vaccines....and as previously stated most people are getting the flu shot which does contain thimerosal.

Are ALL Vaccines Now Mercury-Free?

NO! They're NOT!

That's another cry you hear over and over again: that "we've now removed mercury from all vaccines".

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To assault those tender immune systems with multiple pathogens will WEAKEN their immune systems, not strengthen them.

I agree. The immune system is not strengthened by multiple vaccines...it is WEAKENED. The immune system can become dysfunctional due to the burden of so many toxins and pathogens all administered in a short time span.

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I agree. The immune system is not strengthened by multiple vaccines...it is WEAKENED. The immune system can become dysfunctional due to the burden of so many toxins and pathogens all administered in a short time span.

Another interesting side note to vaccination and side effects. Is anyone aware of how scientists make animal models allergic to certain foods so that they can research food allergies? They VACCINATE them. The same toxins and pathogens that are found in human vaccines will make animal models food allergic so that scientists can further study how to "treat" humans with food allergies. The studies which state how they do it can be found directly on the sites of pharmaceutical companies. Small wonder so many of our kids are dealing with multiple food allergies along with autoimmune disorders in record numbers.

And there are plenty of autoimmune disorders directly caused by vaccines. It's stated on the manufacturer's sites as well if one cares to take a look. PubMed has a wealth of information should you search for vaccine-induced illness....like type I diabetes, lupus, MS, Guillain-Barre. There are even studies showing a phenomenal increase in Alzheimer's risk if you get the flu vaccine 5 years in a row. Meanwhile, pedis are pushing for our kids to get the flu shot every year. I just don't get it. :(

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Another interesting side note to vaccination and side effects. Is anyone aware of how scientists make animal models allergic to certain foods so that they can research food allergies? They VACCINATE them. The same toxins and pathogens that are found in human vaccines will make animal models food allergic so that scientists can further study how to "treat" humans with food allergies. The studies which state how they do it can be found directly on the sites of pharmaceutical companies. Small wonder so many of our kids are dealing with multiple food allergies along with autoimmune disorders in record numbers.

No kidding. :(

When food proteins are injected they are toxic and they produce an immune response.

For this reason they are purposely included in the vaccines to help "jumpstart" the immune system.

Large foreign proteins:

In addition to the above accompanying (protein) material, there are large proteins that are deliberately included, used for such purposes as adjuvants (i.e. to help get an immune "response"). Egg album and gelatin (or gelatine, obtained from selected pieces of calf and cattle skins, de-mineralized cattle bones and pork skin) are in several vaccines.

Casein (milk protein) is in the triple antigen, i.e. DPT vaccine. As explained above, when injected, proteins are toxic to the body. Hence the immune system "response" - it is stressed by this invasion, which results in sensitisation - it becomes sensitive to these substances, not immune to them.

Is it any wonder, then, that allergies to these substances are now so common (in the case of milk, resulting in the relatively recent emergence of milk alternatives such as soy and rice "milk"s)?

Gelatin has become a common allergen since the early 90's and studies link this to sensitization from vaccines containing gelatin.

We concluded that there was a strong causal relationship between gelatin-containing DTaP vaccination, anti-gelatin IgE production, and risk of anaphylaxis following subsequent immunization with live viral vaccines which contain a larger amount of gelatin.

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When food proteins are injected they are toxic and they produce an immune response.

For this reason they are purposely included in the vaccines to help "jumpstart" the immune system.

Gelatin has become a common allergen since the early 90's and studies link this to sensitization from vaccines containing gelatin.

Peanut oil was used as an adjuvant as well. It was quietly removed over the past couple of years because many doctors and scientists felt that this may have contributed to the epidemic of peanut-allergic children. It's almost amusing how women were being told to not eat peanuts to prevent sensitization in their children and yet infants were being injected with peanut oil anyway.

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My son had a biopsy at 13 months. It showed "changes" in the mucosa lining. The slides were read by pathologists at Children's Memorial in Chicago and University of Chicago Hospital, and the pathologists agreed there were slight changes, but not difinitive for Celiac. His blood tests were negative and have remained so. He is now 4. The GI's confirmed Celiac because he has a genetic marker, and the diet worked. It is not the official way to confirm celiac, but since the biopsy was not clearly positive, they still diagnosed Celiac. I was very fortunate that his doctors took his weight loss and inability to eat very seriously. By the way, he has never had diarhea, but has the symptom of constipation. He is healthy and adheres well to his diet. But what do you say when on his fourth birthday he wishes he could eat what everyone else does??

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But what do you say when on his fourth birthday he wishes he could eat what everyone else does??

Just tell him that what everyone else has will make his tummy hurt, and that he can have other yummy food that will keep him well. And have him share some of his 'special' food with other kids. When they like his food, he will be happy with it, too.

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But what do you say when on his fourth birthday he wishes he could eat what everyone else does??

He can have a gluten-free version of what everyone else eats. If you make it from scratch, it will taste every bit as good as the gluteny version. If you need a recipe for his favorites, post a thread on the recipes section of this board, and you'll get tons of answers!

BTW, constipation is a common symptom of celiac. Your doctors should have caught that. Also, my understanding is that ANY change in the mucosal lining indicates celiac.

You might also want to request a copy of his bloodwork. I, too, was told that my bloodwork was negative--with an IgG at 4 times the limit for normal. :ph34r:

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Also, my understanding is that ANY change in the mucosal lining indicates celiac.

Actually no....lots of things can damage the mucosal lining. When the mucosal lining is damaged it can result in increased permeability....therefore anything that can cause leaky gut is capable of damaging the mucosal lining. Yeast are probably the most common culprit in leaky gut but other pathogens can do the same. The list of things which can cause or contribute to mucosal damage is long.

I'm pretty sure thats why they wouldn't diagnose Celiac based only on "slight changes". Its good that they took into consideration genetics and response to diet and he was given a diagnosis based on that.

Leaky gut is not the same as Celiac....although a person can have both.

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Thank you all so much for your helpful info. You made me feel supported and not alone in this big decision. You helped me get a good list of questions together for our GI Dr. This week we met with him and he answered all our questions. We have decided to do the biopsy and to do a gluten free trial for two months regardless of the results.

The big question for the Dr was, "What will you do next if the biopsy is neg." He said he would consider eliminating certain foods, maybe more blood test, and just keep looking for a solution. Doesn't sound like a real good plan to me.

Lab results were IgA = 13 ref range (14-105)

Tissue Transglutaminase IgA f = 0 ref rang (0-4)

The GI Dr said that he had a toddler a year ago who had the same lab reulsts. They didn't do a biopsy at the time of these results but did a biopsy a year later and he was positive for celiac. The Dr said he felt like nursing could sometimes affect the results.

From every thing I've learned from this forum, I feel that this biopsy will probably be neg. My gut is telling me I should do it. I've been feeding him lot's of gluten this week and his poop is yellow/loose and his appetite is poor. Just five more days till the biopsy and until we can be gluten free.

Next week I'll let you know the results of the biopsy.

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  • Who's Online   14 Members, 1 Anonymous, 1,237 Guests (See full list)

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics