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Parents Begging Not To Do Biopsy On Dd


LauraW

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Fiddle-Faddle Community Regular
Just from the other side of the fence....

I am very happy that I got the biopsy. I know that I would have doubted the diagnosis otherwise (heck, I doubted it even with the positive biopsy!). Now I have a definitive answer. Also, for insurance purposes, it helps to have a solid diagnosis with what is still called the "gold standard" in diagnosing Celiac disease.

That said, I agree with others that it's a personal decision, and I don't think that those who forgo the biopsy are "wrong" by any means. I just wanted to offer a different opinion for your consideration.

Good luck, and keep us posted

- Lauren

Another angle: it can also HURT to have a solid diagnosis, as far as the insurance companies are concerned--it can be used as a reason to deny you or your child coverage.


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TCA Contributor

I for one, am really not afraid of the biopsy. Not that it was all roses, but it's really not a big deal. My son has had 3 scopes and my daughter 1. I'm not saying to rush out and do it, though, but it's really not bad. the hard part is that the scopes did not show celiac disease on my son, who had classic symptoms. We went through test after test for 3 years and everything was negative. He finally had the bloodwork done and the only thing that was elavated significantly was IgG, so I was told the bloodwork was inconclusive and he didn't have celiac, but they wanted to do another biopsy to confirm. the biopsy was again negative. He kept getting sicker, so I finally just tried him on the diet. The change in just 3 weeks was AMAZING. His dr. is now fully convinced that he has celiac disease, but has not put in on his record because of the problems in trying to get insurance. He knows I will keep him on the diet, so sees no need to label him. I agree totally. Knowing what I know now, I wouldn't bother with the biopsies, but I don't think any detriment was done by him having them. It's not some traumatic event that will change them forever. It's one day and they sleep through the whole thing.

Now for the grandparents. My in-laws didn't say a lot, but it was very evident that they thought I was nuts for trying the diet after the tests were inconclusive. They didn't see him the first month he was on it, which was an unplanned positive. When they did see him, they were amazed at how great he looked. No dark circles under his eyes, his skin looked good he had actually grown and gained some weight for the first time in a year. Not to mention that he had no D for the first time in his life. They were major doubters before, but are now on board 100%. It's one thing to talk about how hard it is, but it's another to see a child THRIVE!!!! If he ever gets the least amt. of gluten the D comes back, so it's very evident that gluten is the culprit.

If you suspect you have it and are expecting, I urge you to go gluten-free IMMEDIATELY. Malabsorbtion by you can cause problems for the baby. I found this out the hard way too.

I know how you feel like it's all spinning out of control, but it will get easier. Send the grandparents to this site to read the facts about gluten. I hope you feel better soon!

Fiddle-Faddle Community Regular

With all due respect, TCA, it wasn't a big deal for you because it went smoothly for you. Had it not, you might not be recommending it.

It's kind of like saying that ingesting gluten isn't a big deal to someone who can't handle it. The problem with the scope is, they don't know in advance who can't handle the anesthesia.

I do agree that, if you are not yet 100% gluten-free, you should do that immediately.

TCA Contributor

Also with due respect, Fiddle-Faddle, I have never heard of anyone having complications with a biopsy. I'm not saying it has never happened, I just haven't heard of it. I know it is natural to be anxious about any procedure that is done on our precious little ones. I just don't think that this particular one is too bad. Just my opinion, so take it at that. I don't think that I should tell someone to definitely not do it if they feel that they should. The procedure was useless for us, yes, but it wasn't hard on or detrimental to the kids. Some kids would never be diagnosed without it because they are not symptomatic. We just need to keep an open mind on the facts and pray we each make the right decision for our individual kids. :)

Hugs,

Tanya

shayesmom Rookie
Also with due respect, Fiddle-Faddle, I have never heard of anyone having complications with a biopsy. I'm not saying it has never happened, I just haven't heard of it. I know it is natural to be anxious about any procedure that is done on our precious little ones. I just don't think that this particular one is too bad. Just my opinion, so take it at that. I don't think that I should tell someone to definitely not do it if they feel that they should. The procedure was useless for us, yes, but it wasn't hard on or detrimental to the kids. Some kids would never be diagnosed without it because they are not symptomatic. We just need to keep an open mind on the facts and pray we each make the right decision for our individual kids. :)

Hugs,

Tanya

Interesting points on both sides. However, I think that with the biopsy, there can be "complications" or "detrimental" side effects....such as getting that "negative" result and then continuing on gluten for years and years and years, then being scoped MULTIPLE times with more "negative" results. Only to finally try the diet and find out that your child suffered all that time and it was completely and easily preventable by being gluten-free! With a young child, it can take just a few days to a few weeks to notice if the diet is helping. I find it strange that just trying the gluten-free diet is not standard protocol in cases where Celiac is suspected but not showing up officially on the radar.

TCA, you do make a very good argument with the biopsy finding Celiac in those who are relatively asymptomatic. I do wonder though just how many asymptomatic people are going into the GIs office and requesting a biopsy? Perhaps if random blood screening caught something "off" but otherwise....one could argue that the tests can often further muddle up the situation and create confusion as to what the options are.

TCA, you did have another wonderful point....the immediate family DOES get on board once they see the difference the diet can make. I think that prior to knowing the world of Celiac, most of us would have had a very hard time believing what "food" could do to a person. Once you KNOW, it becomes really easy to see the current flaws in the system and to want all those affected to have the speediest recovery possible. I had a dd who had FTT and I took her off gluten before the biopsy because I was desperate to get her healthy. I figured...."oh, once she gains weight, I'll just put her back on gluten and THEN we'll get tested". lol! Little did I know at that time. If dd wants to test that theory out...she'll have to do it on her own as there is NO way I could do that to her deliberately now that I really know what gluten does to her. I just don't have the heart. Or perhaps I am simply no longer curious to really know if it's celiac disease or GS.

Isn't it the recovery and not necessarily the diagnosis which we're all truly interested in? And after seeing the speed of the recovery once on diet (compared to the time it took for all the tests to finally point us definitively in that direction)....I think many of tend to lean towards diet first and foremost. After years of suffering, if there's one thing most of us would do differently, it would be to try the diet after the first biopsy came back negative.

What I especially dislike about the biopsy is that the GIs hardly ever explain to the patient (or their guardian) that a negative result does NOT necessarily mean that they don't have Celiac. In fact, amongst the people I know, they are told EMPHATICALLY by their GIs that their child "cannot possibly have Celiac" as the tests are "highly sensitive" and they came back negative. And the new thing now is for the GI to tell the parents that their biopsy-positive child has a "very, very, very mild case of Celiac". That they can "continue with their current diet. Just don't introduce and NEW wheat-containing foods". I've had TWO parents this week alone tell me that latest piece of nonsense. :blink::angry:

Biopsy or not. The diet NEEDS to be applied. Depending on the parent, either in lieu of the biopsy or directly afterward. No ifs, ands, or butts. JMHO :)

debmidge Rising Star

Hope it all works out; biopsy or not.

Whatever you decide, biopsy or not, as the child's parent, it's your decision. Grandparents can only cheer from sidelines and are obligated to go along with the program as long as the program is not harmful to child; for example parents who only feed their children ground nuts and nutritionless type vegetables (happened in NYC a couple of years ago. DYFS found out in time. Couple were unhinged and infant could have died).

If you don't get biopsy and want to go gluten-free Grandparents have no say in your decision. They should not countermand your orders.

TCA Contributor
Biopsy or not. The diet NEEDS to be applied. Depending on the parent, either in lieu of the biopsy or directly afterward. No ifs, ands, or butts. JMHO :)

AMEN!!!!!!


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LauraW Rookie
Hope it all works out; biopsy or not.

Whatever you decide, biopsy or not, as the child's parent, it's your decision. Grandparents can only cheer from sidelines and are obligated to go along with the program as long as the program is not harmful to child; for example parents who only feed their children ground nuts and nutritionless type vegetables (happened in NYC a couple of years ago. DYFS found out in time. Couple were unhinged and infant could have died).

If you don't get biopsy and want to go gluten-free Grandparents have no say in your decision. They should not countermand your orders.

I'd like to thank everyone for all their support and opinions on what to do. It is very helpful getting two different sides of the fence. I tell you, this has been a terribly hard decision for my husband and I to make. I asked last night "how come we didn't even flinch when we had to put ear tubes in her ears. Their wasn't any consideration on our part on NOT doing it"? "And the anesthesia was actually a tad bit riskier for that". Regardless if we do or don't do biopsy (and I will keep you guys posted), I do want to see what the diet will do. I think my parents think that if we have to put her on this diet, there goes her childhood... Poor thing will have to eat crap until she's older. Oh, the other day my mom said "you know she stop this diet when she gets older". I am thinking, well if she gets sick or constipated at the drop of a hat then, she might change her mind. I have had chronic constipation all my life (3 colonoscopies, been on zelnorm, miralax, abused laxatives, have had vacations pretty much ruined b/c I am so sick) and told my mother the other day that if I could put myself on diet where I would feel better and my stomach would clear up, I would be the first in line to sign up. Alot of people (usually ones who don't suffer from constipation) don't realize how terribly awful it can be, making you just as sick as if you had diarrhea. I do want to have the biopsy after I deliver so should I still be gluten-free now or wait. I do suffer from stomach issues right now, but obviously, I lived with it this long, I can wait another couple months. What to do????

chrissy Collaborator

if you want to have a biopsy done, you need to be eating gluten.

is the antigliadin test the only test that was run on your daughter? antigliadin can be raised by things other than celiac. the TTG test is the test that will tell you if there is an autoimmune reaction.

Guest nini

If you are absolutely planning on the biopsy after you deliver then no, do not go off gluten yet. But I have to ask why not just try the diet instead of the biopsy? Regardless of the results of the biopsy you are still going to have the same symptoms, and the only treatment is the gluten free diet anyway, so what have you got to lose by just trying the diet and seeing if it makes you feel better? And no the diet is not bad for pregnancy unlike what my ignorant ob/gyn told me.

My daughter is 6 years old. She has been on the gluten-free diet since she was 3. She is not missing out on her childhood. She still goes to McDonalds and eats a burger without the bun or fruit dippers or a hot fudge sundae or a milkshake, she still can go to Chik Fil A and get Waffle Fries and an Ice Dream Cup and a baked chicken filet and a fruit cup and Pink Lemonade or Hi C Fruit Punch... She can still go to Wendy's and get a Frosty with m&m's, a burger without a bun, a stuffed baked potato, a cup of chili, mandarin oranges...

there are TONS of candies that are naturally gluten-free, so she gets to indulge in candy just like her friends (she just has to avoid the ones that contain gluten)

as far as birthday parties go, we make it work, the most important part is the socialization aspect of it and I have yet to run into a problem with a mom not wanting to accomodate her needs... The only time we couldn't go to a party was a place that didn't allow outside food to be brought in and they didn't have any gluten-free options. But my daughter really wasn't that great of friends with that particular child anyway so it really didn't matter. I usually send her with some pre cooked gluten-free pizza and a cupcake (I make them ahead and freeze them)... She's even successfully navigated a slumber party.

so, the excuse that "there goes her childhood" doesn't fly with me. The standard American diet is crap anyway, and most kids eat too much junk food as it is, The gluten-free diet can be so much healthier especially if you stick with foods that are naturally gluten-free. You and your child don't have to eat "weird" foods... there are plenty of "normal" foods out there to eat. And I can help you with this if you want.

You have to make the decision are you going to make it harder than it has to be? Or are you going to say This can be easy and it's worth a shot... what have you got to lose by just trying the diet all the way around and if your familes health improves because of it, why on earth would you question the results and then go back and say "well I didn't get tested so I don't know?" I say we need to learn to trust our own bodies and the signals they are giving us, and learn to heal ourselves with healthy food instead of relying on Western medicine. Sure western medicine has saved a lot of lives, but in this particular area, western medicine is sadly lacking.

Fiddle-Faddle Community Regular

If you stay on gluten while you are pregnant, you run the risk of doing harm both to yourself and to the baby.

As far as the risks of the biopsy, I think the most serious risks are from the anesthesia. I have a friend who is an anesthesiologist, and she had an absolute fit when I was considering IV sedation to have my wisdom teeth out. She read me the riot act!

Since that conversation with her, I have had 2 endoscopies without anesthesia (would not recommend that for a child, obviously), and I still had complications! With the second one, it took 2 yerars to get my normal speaking voice back, and I basically gave up singing lullabies. No, that's not life-threatening in any way, but it is annoying. I've heard of people having various things perforated during an endoscopy. There are definite risks, and I believe the risks for peiatric patients is greater than for adults. Perhaps the biggest risk is developmental delay--which has not been studied, so the doctors don't even know that it IS a risk, but one of the first questions a developmental specialist will ask you during an eval is whether the child had a major trauma or surgery.

If your daughter needed ear tubes, there's a good chance that either gluten or casein is the cause of that, too. Not to discount the possibility of anything anatomical going on, I just know a few people whose children had major ear infection problems til they stopped casein, and, in one case, gluten. NONE of them had doctors who believed that that was the problem, even after everything cleared up without the surgery.

Everything else, Nini and TCA already explained both sides better than I can. Whatever you decide, I wish you lots of luck!

LauraW Rookie
if you want to have a biopsy done, you need to be eating gluten.

is the antigliadin test the only test that was run on your daughter? antigliadin can be raised by things other than celiac. the TTG test is the test that will tell you if there is an autoimmune reaction.

The antigliadin Iga was 4 (positive being over 4)

The antigliadin Igg was 33 (positive being over 9)

Her ttg Igg was less than 1 (negative)

Her ttb Iga was less than 1 (negative)

and her Immunoglobin A was 49 (positive)

so maybe since the ttg came back negative, that is why the dr wants the biopsy. Who knows? Me, on the other hand:

Iga antigliadin 5

Igg antigliadin 17

they did not test ttg on me

Interesting...

TCA Contributor

I agree with Nini, especially since you are expecting. I would go gluten-free immediately to make sure the baby is getting the nutrients it needs. I went gluten-free thinking I didn't have a problem with gluten, but knowing my daughter did and since I was nursing her I was 100% gluten-free. I had so many improvements in my health that I"m not going back on gluten to get tested. It's just not worth it to have a diagnosis that might prohibit me from getting insurance. Just my opinion, but you will have to decide for yourself. I hope you all feel better soon!

chrissy Collaborator

i don't see those tests as being positive for celiac. did your doctor say that they were a positive test for celiac? i can understand people being wary of those test results-----however, it is not their call, it is yours. a gluten free diet is not going to hurt anything, and it may help many things. if you want a definite diagnosis, though, to keep people off your back, you will need to do some further testing.

LauraW Rookie
i don't see those tests as being positive for celiac. did your doctor say that they were a positive test for celiac? i can understand people being wary of those test results-----however, it is not their call, it is yours. a gluten free diet is not going to hurt anything, and it may help many things. if you want a definite diagnosis, though, to keep people off your back, you will need to do some further testing.

he said he suspected it to be celiac b/c Igg was way high. On her chart, I had the nurse look it up yesterday, it said "possible celiac".

Fiddle-Faddle Community Regular

Seems to me that the 2 things of utmost importance are:

#1) that you and your daughter resolve your health problems as soon as possible and

#2) That you get some ANSWERS so that you can achieve #1.

Most likely, the quickest way to both #1 and #2 is for both of you to go off gluten. That WILL give you answers. A biopsy might--or might not. A biopsy is iffy and risky. Not a huge risk, but nonetheless, a real risk.

What your parents think, what anybody thinks, even what the doctors think, are all unimportant compared to #1 and #2.

par18 Apprentice
I'd like to thank everyone for all their support and opinions on what to do. It is very helpful getting two different sides of the fence. I tell you, this has been a terribly hard decision for my husband and I to make. I asked last night "how come we didn't even flinch when we had to put ear tubes in her ears. Their wasn't any consideration on our part on NOT doing it"? "And the anesthesia was actually a tad bit riskier for that". Regardless if we do or don't do biopsy (and I will keep you guys posted), I do want to see what the diet will do. I think my parents think that if we have to put her on this diet, there goes her childhood... Poor thing will have to eat crap until she's older. Oh, the other day my mom said "you know she stop this diet when she gets older". I am thinking, well if she gets sick or constipated at the drop of a hat then, she might change her mind. I have had chronic constipation all my life (3 colonoscopies, been on zelnorm, miralax, abused laxatives, have had vacations pretty much ruined b/c I am so sick) and told my mother the other day that if I could put myself on diet where I would feel better and my stomach would clear up, I would be the first in line to sign up. Alot of people (usually ones who don't suffer from constipation) don't realize how terribly awful it can be, making you just as sick as if you had diarrhea. I do want to have the biopsy after I deliver so should I still be gluten-free now or wait. I do suffer from stomach issues right now, but obviously, I lived with it this long, I can wait another couple months. What to do????

Laura,

Why wait even one more day? I take it from your post you have never tried the gluten free diet. It can either help you are not. It can't hurt to try. If it does work then you have the experience in case you daughter has to go on it. As a parent you have the opportunity to lead by example. Good luck.

Tom

skoki-mom Explorer

Laura,

I just wanted to add that a negative reaction from your parents or your mother's friends is the least of your worries. How on earth is she going to miss out on childhood by following a diet? Her childhood is what you, and she, make it. I think they are being extremely selfish, especially considering that you may have it, too. Don't they want their own daughter to be healthy? Here's the kicker, if you have it, and if your daughter has it, chances are good at least one of them has it, too, and doesn't know it. Perhaps they should read the list of parents-worst-nightmare list of complications from untreated celiac disease before they talk about "missing out on childhood". Better than being dead. That was probably overly dramatic, but you get the idea. I know how emotional you are when you are pregnant, which is probably making this whole thing a lot harder on you now (I remember crying at the drop of a hat).

FWIW, I had the biopsy to get my final Dx and I have no regrets about it. It was a simple procedure and I carried on with my life within a couple of hours. Yes, it's true I can no longer get extended health insurance (I live in Canada), so that sucks. But, at least I know what I am dealing with and I have no doubts about it.

Good luck with whatever you decide. Don't let your parents control your life!!! (((hugs)))

LauraW Rookie
Laura,

I just wanted to add that a negative reaction from your parents or your mother's friends is the least of your worries. How on earth is she going to miss out on childhood by following a diet? Her childhood is what you, and she, make it. I think they are being extremely selfish, especially considering that you may have it, too. Don't they want their own daughter to be healthy? Here's the kicker, if you have it, and if your daughter has it, chances are good at least one of them has it, too, and doesn't know it. Perhaps they should read the list of parents-worst-nightmare list of complications from untreated celiac disease before they talk about "missing out on childhood". Better than being dead. That was probably overly dramatic, but you get the idea. I know how emotional you are when you are pregnant, which is probably making this whole thing a lot harder on you now (I remember crying at the drop of a hat).

FWIW, I had the biopsy to get my final Dx and I have no regrets about it. It was a simple procedure and I carried on with my life within a couple of hours. Yes, it's true I can no longer get extended health insurance (I live in Canada), so that sucks. But, at least I know what I am dealing with and I have no doubts about it.

Good luck with whatever you decide. Don't let your parents control your life!!! (((hugs)))

Thanks for your kind words. It really does make me feel better. I can't even talk to them about it anymore, therefore, I won't. I am trying not to stress out being pregnant and all. I had my daughter at 36 weeks and I am 33 weeks right now, so stress could easily push me right into labor. My best friend has been lecturing me to not stress about this, so I don't go into labor. I am now freaked that if we do the biopsy and it is positive I will have insurance issues. RIght now I work for a pharmaceutical company and have insurance through a large group but if I ever switch may have problems. What do you mean by extended coverage? Anyway, thanks for the advice with my mom. I am trying to just avoid this topic with her.

Laura

wonkabar Contributor

HI! I just finished reading this thread and agree that you need to do what you feel to be in the best interest of your daughter. While Zachary was highly symptomatic of Celiac Disease, after our experience with our boob-of-a pediatric gi who told us he was "just fine" despite all of his symptoms, we decided to just try the gluten-free diet. We were't comfortable putting him through that kind of procedure and using anesthesia due to his age. But, we also weren't dealing with a child with FTT or additional medical issues. I know it's frustrating and irritating to get that type of unsolicited "advice" from family, but this is really about what you think and want. They can either support you in your efforts to help your daughter or choose to create inevitable problems through their ignorance, inappropriate comments and attempts to sabatoge your efforts.

In terms of having a "normal childhood", being sick all the time is simply NOT normal! My son does everything that any other kid does. The only difference is we travel with food for him or provide him with "party food". (I always have extra stuff in my diaperbag for him just in case we need it!) We have a very active social life and his issues with gluten are simply a part of this life. He doesn't know any differently b/c we don't make a huge deal over it and he has food/snacks just as any other kid does. They don't look different and taste really good. Not to mention it's a really healthy diet. Once gluten-free chocolate cupcakes are frosted and have sprinkles on them they're just as appealing to the other kids as your good old-fashioned gluteny cupcakes. Mommy and Daddy usually raid the stash when the kiddies are fast asleep!! :P

This past March, we vacationed in St. John with the kids; Zachary was just about 3 y/o and Allison was 14 months. It's a 5 hour flight to St. Thomas and then a ferry ride over to St. John. We all made it through the flight and ferry ride unscathed...gluten-free diet and all. We stayed in a villa so we just packed an entire suitcase of gluten-free foods (and diapers)!! :) We ate out every night and the resturaunts were extremely accomodating. Over the summer we did lots of stuff, too---we bbq'd with friends, visitied grandma in VA, went to the Outer Banks (NC) for a week, went to the aquarium, the Philadelphia Zoo and Hershey Park for two nights...all of this with Zachary following a strict gluten-free diet. Does it require a little extra planning and packing, of course it does. But that certainly doesn't mean that we're not gonna do anything with him because he can't have gluten. I can assure you that your daughter will experience a "normal childhood" living on a gluten free diet. ;)

Your daughter's attitude towards her diet and the level of normalcy in her life relies upon you and only you. Everyone else needs to mind their own business. They've already been given the opportunity to raise their children and now it's your turn to be given the same opportunity. It sounds like you know what's best for her and will do whatever you need to do to afford her with the "normal childhood" she's obviously going to experience. :)

Also, both of my babies were preemies as the result of pre-term--Zachary/32 weeks and Allison/35 weeks. Please try not to stress too much; I know how difficult it is especially when you have a history of preterm labor. I went into preterm with Zachary at 27 weeks and Allison at 34 weeks. Keep your feet elevated, drink lots of water and take lots of deep breaths to help you relax. Baby #2 surely won't like any additional stress and may begin to protest! :) Lots of luck tomorrow!

Fiddle-Faddle Community Regular

Oh, dear--here you are asking for help, and we are all giving you stressful answers! :blink:

Sounds like your mom is in major denial, but I'm guessing that denial is a very common and human reaction at first--especially if deep inside, she is #1) suspecting that she might have celiac herself and 2) she is probably feeling horribly guilty that she never realized that you have it.

Maybe after a little time you can print out some pages from celiac.com,w ith the really negative parts highlighted. Once you get the hang of the diet (for me, there were about 2 weeks where it was really overwhelming, but that was before I found the recipes section here), invite her over for tea and gluten-free homemade cookies (they really ARE just as good as the old gluteny ones!), and the you can reassure her that everything will be fine.

TCA Contributor
:D:D Just want to send stress free hugs and prayers! Whenever you do decide to go gluten-free, there is a link in my signature that goes to another discussion one way to go gluten-free. I think you might find it helpful and take some of the stress out of the process. All of us had to learn the hard way! Like Alison said, we NEVER want to stress you out here, we just all have LOTS of opinions! :D:D
LauraW Rookie
Oh, dear--here you are asking for help, and we are all giving you stressful answers! :blink:

Sounds like your mom is in major denial, but I'm guessing that denial is a very common and human reaction at first--especially if deep inside, she is #1) suspecting that she might have celiac herself and 2) she is probably feeling horribly guilty that she never realized that you have it.

Maybe after a little time you can print out some pages from celiac.com,w ith the really negative parts highlighted. Once you get the hang of the diet (for me, there were about 2 weeks where it was really overwhelming, but that was before I found the recipes section here), invite her over for tea and gluten-free homemade cookies (they really ARE just as good as the old gluteny ones!), and the you can reassure her that everything will be fine.

You totally hit the nail on the head. My mother totally is a celiac but would NEVER go get tested. Why you ask? Because god forbid she has to change her diet and might have to put a little effort into it. Lord I hope she never finds this message board or I'm out of the will. Just teasin! But she has the total opposite problem. THe big D. And she gets it right after she eats. I'm talkin all the time. We are in the car "pull over" if we are on the phone "oh my stomach hurts, I'm gonna get diarrhea" "I need some immodium". She's really the one with all the classic symptoms. Her mother had my problem, chronic constipation, and the scary thing is that they day she died in the hospital (and she died of heart failure) my cousin said look at her stomach. She looked 8 months pregnant (twisted thought I know) but she probably was a celiac and had that bloated stomach. THinking back on it, she was always bloated and hooked on milk of magnesia. My Sister, well she has the big D. I'm telling you, if they tested, it would be positive. My sisters 9 month old has the biggest blow outs when she feeds him the turkey gerber food and the nurse told me to tell them so they could tell the pediatrician. I don't think she will. DENIAL ain't just a river in Egypt if you know what I mean!!!

Fiddle-Faddle Community Regular

Maybe if you sat your mom down and said, "Look I think I've found the answer to our problems, and it's going to be a lot easier than it sounds, and we're going to feel so much BETTER!!!"

Or maybe she has to see you feeling better first?

Oh, dear. I swear, bull-headed parents are SO much worse than bull-headed children!

Oh, well, take care of yourself first, and maybe she'll come around.

Guest nini

my mom is just starting to come around to realizing that she may be gluten intolerant, but that doesn't mean she's ready to change her diet just yet... I love that saying about Denial isn't just a river in Egypt! Aint that the truth! I'm also convinced my sister and niece and nephew have it and even my dad, but guess what? My dad's at least on the gluten-free diet!

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    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
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