Help! Stressed And Totally Confused.

[rez]

This past year has been an unbelievable one. First, we went through 5 doctors trying to find someone who would believe us. Now, we found great doctors and my son has tested positive on tTG and positive on the Hydrogen breath test for a Lactose Intolerance. Here's the unbelievable part. He complained of CONSTANT stomach pain for 11 months!!! Finally, once we had him off gluten, dairy, and soy he got much better. He was off these things for 4 months. The tTG was positive after 3 months gluten free. Now, they told us to do a gluten challenge to prepare for the biopsy. We were terrified!!! A normal diet.....Are they crazy. He's eating Krispy Kreme, Chicken nuggets, fries, pop tarts, cookies, pretzels and NOTHING!!!!!!!! Panera bagels too! He has had a few tummy aches, but we've been doing it for over 2 weeks now. Nothing like before. He does have a canker or two, but not like the outbreaks of 8 he would get before. He is not doing dairy because we know that really bothers him, but we thought the gluten would be terrible. We have really suspected Celiac all along and his symptoms fit to a "T". Now, the symptoms have disappeared and we are seeing one of the best docs in the country on the 31st. Will he think we're nuts? My daughter who's 10 was just diagnosed w/ Hypothyroid so she needs to be checked out as well. My sister thinks we healed his insides and it's going to take him a while to react again, but I thought it would be the opposite. I had a friend who's daughter was diagnosed w/ Celiac as a toddler and then the idiot GI said put her back on gluten to see if it redamages the small intestine. She put her back on gluten and then the doc decided not to re-biopsy her. She was perfectly fine for over 2 years and now the symptoms are coming back. THis is the weirdest disease. I swear I'm losing my mind!!!!!! Anyone have any advice to add?

[concerned-mom061]

Hello...I'm sorry to hear about your problem. Celiac disease can be very stressful. And, not everyone has the same symptoms or reacts the same way. My little girl started having symptoms at birth...then she got little better b/t 4-6 months...then got really bad at 8 months. She battled with all kinds of problems ranging from severe diarhea, constipation, extreme gas, chronic infections, weight loss, mouth sores, rashes, refusal to eat...etc....

She was taken from all foods and fed through an I.V. for a month....and her stomach was allowed to heal. The symptoms came back when she was put back on foods.....but slowly one at at time...then they all hit hard. Her dr. said what your sister said..she had time to heal...now she is doing the damage all over again. Some people react immediately....others it takes a little more time. But, I have found that it comes faster and faster w/each outbreak. Think of it this way....you buy a new belt....and it is in perfect condition and strong and unable to just tear apart...but over time it starts to wear out and continues to do so until finally one day you go to tighten it up and it just breaks. It's kind of like that...when the stomach is healed.it takes a little longer to get through and wear out all the villi. But, once it has been introduced to the gluten it becomes weaker and weaker until it cannot tolerate anything. *sighs* I think I got that out right..lol.

Just b/c he isn't showing sypmtoms as severe as he was before does not mean his body is not reacting. If he was on Dairy and was allergic to it....then that would have upset his stmach as well....and made the outbreaks come faster and more severe. I, personally, would go forward w/the doctor.....for to me....it's something I would want to know one way or another.

Good luck, and I hope everything works out for you and your family. I hope I helped in some way.

Bree

[emcmaster]

He was completely gluten-free for 4 months, right? That may have been enough time to heal him a little so that he doesn't currently have symptoms. When I had been gluten-free for 6 months, I (stupidly) went on a gluten binge while we were in Vegas. I ate anything and everything gluten for 3 days and didn't have symptoms. I did, however, react really, really badly the first time after that that I got accidentally glutened. It appears that I undid months of healing in 3 days.

The severeness of symptoms pretty much mirrors the damage done to the intestines. The longer your son had been gluten-free, the more healing had occured and his intestines were less damaged, thus his symptoms are less severe.

IMO, your son showed, by his improvement when you cut those things out of his diet, that he was/is intolerant to them. Even if he's not reacting now, he still has the intolerances and it's doing damage to his villi.

[shayesmom]

This past year has been an unbelievable one. First, we went through 5 doctors trying to find someone who would believe us. Now, we found great doctors and my son has tested positive on tTG and positive on the Hydrogen breath test for a Lactose Intolerance. Here's the unbelievable part. He complained of CONSTANT stomach pain for 11 months!!! Finally, once we had him off gluten, dairy, and soy he got much better. He was off these things for 4 months. The tTG was positive after 3 months gluten free. Now, they told us to do a gluten challenge to prepare for the biopsy. We were terrified!!! A normal diet.....Are they crazy. He's eating Krispy Kreme, Chicken nuggets, fries, pop tarts, cookies, pretzels and NOTHING!!!!!!!! Panera bagels too! He has had a few tummy aches, but we've been doing it for over 2 weeks now. Nothing like before. He does have a canker or two, but not like the outbreaks of 8 he would get before. He is not doing dairy because we know that really bothers him, but we thought the gluten would be terrible. We have really suspected Celiac all along and his symptoms fit to a "T". Now, the symptoms have disappeared and we are seeing one of the best docs in the country on the 31st. Will he think we're nuts? My daughter who's 10 was just diagnosed w/ Hypothyroid so she needs to be checked out as well. My sister thinks we healed his insides and it's going to take him a while to react again, but I thought it would be the opposite. I had a friend who's daughter was diagnosed w/ Celiac as a toddler and then the idiot GI said put her back on gluten to see if it redamages the small intestine. She put her back on gluten and then the doc decided not to re-biopsy her. She was perfectly fine for over 2 years and now the symptoms are coming back. THis is the weirdest disease. I swear I'm losing my mind!!!!!! Anyone have any advice to add?

I've read of people having biopsy-proven Celiac who have gone on the diet for a year, been biopsied to reveal the intestines were completely healed and then went back on gluten and it taking several years for the damage to reappear on biopsy. There comes a point where you just need to draw a line on the doctors experimenting with your child's health on the line.

We all want to be SURE that we're doing the right thing by implementing a diet such as this. But sometimes, confidence in yourself and in what you are physically observing tells you more than a mountain of tests. If your son has been better on the diet, that says a lot. And you do have some positive bloodwork which is a strong indicator that this is a factor in his health issues. In the words of my wise homeopath...."If it looks like a duck, acts like a duck and quacks like a duck....sometimes it actually is a duck".

Please don't think that I am making light of your situation because that's not my intent. I just want to tell you not to stress this upcoming appointment with the "Celiac expert". You don't have to convince him that there is a problem. You've been observing the problem. The only person that you have to convince is yourself. There's a lot of emotion wrapped up in finally accepting this disease for what it is. We've all been there. I had many of the same issues with accepting this with my dd and she tested negative on all fronts. Give yourself more credit and keep in mind that you are with your son 24/7. Your observations and trials are VERY valuable in where this situation ultimately goes. And yes, the disease can take all sorts of twists and turns and may seem to "go away". Been there myself with my dd. I'm not sure how I ended up just accepting things and moving forward with a gluten-free lifestyle. I'm sure many of the posters here helped kick me in the right direction! But once I just let go of the need for approval, validation (and perhaps....decided to accept the responsibility of the decision??) it did get easier and I haven't looked back since. Heck! I even put myself on the diet in January '06 and I barely had noticable symptoms. Hanging onto a lifestyle with gluten just didn't seem worth the risks.

Hang in there and best of luck to you!

[rez]

Thanks for the replies. I'm looking at the big picture I guess. I want to be SURE before I diagnose Thomas with a life long condition. I also think it's important to try to get the medical diagnosis so physicians can learn that the disease is common and my other children will need to get screened. I feel that a proper diagnosis will also help my extended family. If my son's biopsy is positive, my entire family will be screened and then we will branch out to our extended family. Thanks so much for all of your input. It's nice to have the support and encouragement from those who have been there. I'm just praying that we will get closure soon so we can move forward. I will continue to watch him closely and we are seeing an excellent physician in Chicago. HE is one of the best in the world. Thanks again so much and I will keep all of you posted.

[Fiddle-Faddle]

. I want to be SURE before I diagnose Thomas with a life long condition.

Why would a biopsy on an already-healed intestine make you SURE?

If his bloodwork is positive and he had an overwhelmingly positive response to the diet, what are you going to do if the biopsy is negative? Put him back on gluten?

Most of us here already know that the biopsy is not, as the doctors were taught, the gold standard, but merely a hit-or-miss. If they biopsy the right patch AND read it correctly under the microscope, it could still be negative, especially in a toddler.

Some here will disagree with me, but a biopsy is an invasive procedure and carries risks, including death. Yes, that is very rare, but it is a real risk. Is it really worth risking his health just to educate the physicians?

Whether or not Thomas actually HAS the lifelong condition is not controlled by the biopsy.

I actually had a dentist try to convince me that my 2-year-old needed to be sedated and have several thousand dollars worth of restorative work because she thought he had severe tooth decay. It turned out to be not decay but staining from iron and antibiotics that I was given when pregnant. The same week he was supposed to have that "routine procedure," another child died on the table during a similar "routine procedure."

What you know to be right for your child is more important than what any of us, or your family, or your doctors think.

[rez]

I have read that a virus or parasite can also cause damage and inflammation to the small intestine. It can also cause a temporary lactose intolerance. I guess part of me wonders if that's what could have happened. He had food poisoning last April. I am doing the best for my child and am going to see a wonderful doctor. My main reason for posting was to see if anyone had an experience of going back on gluten and not having any symptoms. For our family, a gluten free diet is a lifestyle that we will gladly adapt to if that is the case. I also think it is very important that these cases be documented in the medical community so that doctors everywhere realize Celiac isn't rare. Also, it's important to know whether it could be Crohn's also. I also want to have my child in the hands of great doctors. If people self diagnose themselves, how do they go about follow-up care and family testing. There are many autoimmune conditions and other secondary conditions that can crop up with Celiac. I feel better being in the hands of very competent doctors vs. managing my entire family's health issues myself. I feel so blessed to have finally found wonderful doctors. Thanks for all your opinions. I really appreciate everyone taking the time to post. It's nice to see all the options and get support. Thanks so much.

[shayesmom]

Thanks for the replies. I'm looking at the big picture I guess. I want to be SURE before I diagnose Thomas with a life long condition. I also think it's important to try to get the medical diagnosis so physicians can learn that the disease is common and my other children will need to get screened. I feel that a proper diagnosis will also help my extended family. If my son's biopsy is positive, my entire family will be screened and then we will branch out to our extended family. Thanks so much for all of your input. It's nice to have the support and encouragement from those who have been there. I'm just praying that we will get closure soon so we can move forward. I will continue to watch him closely and we are seeing an excellent physician in Chicago. HE is one of the best in the world. Thanks again so much and I will keep all of you posted.

I understand your desire for a positive diagnosis. But always keep it in mind that sometimes there are things in life of which we cannot be 100% sure of. Not wanting to diagnose your child with a life-long condition is normal. But at the same time, you don't know what's in store for you or him down the road. And an ounce of prevention now may be worth a lot more than a pound of "cure" later on in life. Hindsight is always 20/20. I don't mean to lecture. Just wondering if you've drawn a mental "line" as to how far you want to take this in terms of diagnostics vs. diet.

As for physicians "learning that this disease is so common"....at what cost? I've actually encountered parents whose children have had positive biopsies and whose doctors have told them to remain on their current diet as "the damage is minimal....your child only has a MILD case of Celiac. Just don't introduce any NEW wheat products". I'm thrilled that at least you aren't going to be stuck with one of those doctors telling you how to proceed! And I'm sure that you'll get some solid advice from who you're about to see. I do wish you luck and I hope that you get the information you seek that will resolve this for you. I can understand wanting closure. Closure can be very comforting as well as motivating.

And as for the extended family...that's a debatable point. My aunt got a positive biopsy and diagnosis. Three of her sisters are RNs. Do you think that they're getting screened? That's a BIG, FAT NO. My aunt has 9 brothers and sisters. The only one who's been tested is my mother and all of her tests have been negative for the past decade. Meanwhile, she does really well while on diet and really poorly off. But she hangs onto her "negative" diagnosis like it's the Holy Grail because she doesn't want to commit to the diet (it puts a damper on her lunch and dinner outings). Meanwhile, my dd has done incredibly well on the diet, as have I and now my sister is finding the same to hold true for her. The rest of the extended family has problems with IBS, autoimmune thyroid disease, fatty liver, anemia, miscarriages, cancer, bi-polar disorder/depression issues, epilepsy, GERD, h. pylori, you name it. I have over 30 aunts and uncles. Only one has volunteered to be screened (the one with the positive biopsy and only after I did the diet with my dd). All the rest are in denial about their problems and are busy telling me that the problems with my dd are "all in my head". Meanwhile, I have heard so many stories of them having "accidents" going to and from one location from the next. lol!! One of my aunts has had cancer, fatty liver, hypoglycemia, chronic anemia (B-12 deficiency for which she's had shots for 20 years) and IBS so bad that she's used every household's bathroom on her 2 mile walking route. Not to mention she has an "accident" every week and on the last car trip to visit us, she ate sandwiches the entire 13 hour ride only to spend 3 full days in the bathroom (diarrhea 7+ times per day...she blamed it on the organic coffee creamer at my mom's which she had on the 3rd day there).

Denial is a pretty powerful thing (in regards to my family). And I'm not about to sacrifice my dd's hard-won health in order to try to pound the health risks into the rest of the extended family. That is not my dd's burden to carry. Please don't let external factors step between what's right for you and your son. No matter how good any of our intentions may be, we have no power to sway others in how they lead their lives. The same relatives who were "worried sick" over the weight gain issues and chronic hyperactivity in my dd and who SAW the enormous changes in her health are now the same relatives who are sniping behind my back on how stupid the diet is and how my dd should have "outgrown" this by now. They don't get it nor will they because they don't want to see it. They don't want to change their lives and that's their priority. I hope that this isn't the case in your family, but it has been in mine...and it's a pretty large family. I've shared our story with them and given them all sorts of information. The general response, "I'd DIE without bread!". To each his own. It would be nice to have more "support" (which I don't have too many problems with my mom, sister and MIL), but at this point, I just plan ahead and find ways to get us to and from family functions without glutenings. It's not so bad once you find a routine.

[shayesmom]

P.S.

I posted last year (I believe in December 2005...so a bit more than a year ago) on how my dd was exposed to some gluten without any reactions. I "challenged" her a few times with no response. However, I didn't care to push the issue and kept her gluten-free after that. Dd does relatively okay with trace exposures but her reactions to larger amounts (accidental) are much more pronounced than they used to be. Larger amounts would be several crumbs. I wonder at times if the reason she is doing relatively well is because I got her off of gluten before she tested positive via the tests? It does suck not to know....but then again...it doesn't because at least her reactions are short-lived.

Yes! This is a freaky weird disease at times!

[Fiddle-Faddle]

If people self diagnose themselves, how do they go about follow-up care and family testing. There are many autoimmune conditions and other secondary conditions that can crop up with Celiac.

Follow-up care meaning what--medicine? Celiac disease doesn't HAVE any medications, nor does it require any? Family testing? They can try the gluten-free diet and see if their tummy aches go away. The diet is not only a valid diagnostic tool, for most people, it is more accurate than the biopsy. You CAN have celiac disease/gluten intolerance and NOT have villi damage! Either way, the only way to manage is to stay away from gluten, which is also the only way to prevent the other autoimmune disorders and secondary conditions. Every day eating gluten is another step towards one of those very conditions. I'm not willing to risk one of those conditions by consuming gluten for months in order to have a biopsy done, and if my kids had positive bloodwork, I wouldn't be risking their health for a biopsy, either, especially when the accuracy rate in toddlers is so dismal (i.e., false negatives).

I'm NOT trying to get you upset, and if I am, I do apologize. I'm calling it as I see it--which most doctors can't or won't do.

When my oldest child had open-heart surgery, do you think the surgeon said ANYTHING about what the risk was of his dying on the table? Heck, no. I had to ask several very direct questions before he said something offhand about there being some risk of infection. Did anyone tell me that when children are on bypass, there is a risk of neurological damage? NO. There weren't even any studies on children; only a year later did anyone tell me that it is common in adults who have been on bypass.

My own experience with surgeons is that they don't tell you the risks unless you ask, and even then, 9 times out of 10, they minimize the risks or lie completely.

Just out of curiosity, how do you know that this doctor is so wonderful? Especially for celiac? I certainly hope that he is, and there ARE some out there. I am not trying to challenge his wonderfulness if he really is wonderful. But I have had TERRIBLE experiences with doctors that others have raved about. (In all fairness, I must admit that the orthopedic surgeon who operated on my shoulder WAS every bit as good as he was cracked up to be, and I owe him a great deal! So, not all my experiences have been terrible--just all but one!!)

Whatever you decide, please keep us posted and let us know how you and your little one are doing, and I do hope that your family either comes on board with you, or at least, gets off your back!

[rez]

I think you may have misunderstood and read another post regarding family. My family has always been 110% supportive. The doctor we're seeing is Dr. Guandalini at the Celiac Research Center in Chicago. I have heard nothing but wonderful things about him. We also have two other wonderful doctors, both who have called me personally at home to check up on Thomas, another pediatric GI and a family practice doctor. They are wonderful! I am so thankful for the wonderful doctor we found. While doing bloodwork for Haley, he discovered she was hypothyroid. For my family, I feel we are doing the right thing. Thomas is doing great and not experiencing any discomfort. I am so thankful that he is so easily completing his gluten challenge in order to receive an accurate diagnosis. My original question was regarding if anyone showed no symptoms when ingesting gluten. Here's a thought. Go off symptoms right? Well, Thomas is lactose intolerant. That is the main symptom of his Celiac. He doesn't get sick at all from eating the gluten, it's the lactose intolerance as a secondary condition that makes him miserable. If I had no help from the medical community, I never would have found out about the Celiac. I would have just gone by dietary response and realized it was the milk that made him sick, not the gluten. I would have been dead wrong. Unless you see what's going on inside, you don't know for sure. This, for me, was a good lesson learned.

[e&j0304]

I absolutely see what you are saying and I agree that you are doing the right thing. If it is possible, getting an accurate diagnosis is best for the child. Of course this is just my personal opinion and I will likely get slammed for it, but I believe that when possible the child deserves to know 100% if they have a life-long disease. We all know that this isn't possible all of the time and I myself have my daughter on a gluten-free diet without positive testing. We did, however, try our hardest to get a conclusive diagnosis and are actually still working on that, which is another story altogether and a long one at that!

I'm sorry that no one was able to actually answer your original question. I don't know the answer to it myself so hopefully someone else will.

Good luck!

Shannon

[taweavmo3]

In the first few months my dd was on the diet, she didn't react right away either. I think in our case, it depended on the fact that my dd's Ttg levels were so high. I believe it took a while before gluten was actually out of her system......Now, two years later, she reacts severely to a gluten accident. But once it is in her system, she will not react again if she has another accident within a few weeks time. This happened at one point last spring. A lady at church gave her a cookie......she reacted immediately. A few days later, I found out my mom had give her a cracker that she thought was safe. Emmie didn't react at all after that, b/c she already had gluten in her system. So if your son's antibody levels have not had a chance to decrease a great deal, I think that might explain why you are not seeing a severe reaction. Just my 2 cents, lol...I don't have any scientific proof that this is what happens, but that has been my experience!

I hope the doctors you have are really good, if so, you found the needle in the haystack. Most docs are not well informed about Celiac in the least. That's why so many parents, myself included, end up taking matters into their own hands. I hope you do get the answers you are looking for....it is much easier when you have a definitive diagnosis. But just in case the biopsy comes back negative.....I hope you will still consider the diet. My dd has neurological issues we are still dealing with, since it took a long time of her being sick before she was dx'd. I would just hate for any more kids to have to deal with the same issues. Being a kid is hard enough these days! Take care, and good luck.

[rez]

Thanks for your posts. I am definitely open to trying the diet again. It would be nice to have an accurate diagnosis, but the most important thing is that Thomas feels good. Thanks again.

[Fiddle-Faddle]

Wow, it does sound like you have found some good doctors! Hooray!

You are quite right--I did not address your original question about gluten challenge. Sorry!

I had very few symptoms of gluten intolerance--decades of no problems whatsoever, and then slowly increasingly frequent bloating, and alternating mildly loose stools and mild constipation, all of which I was able to totally ignore, and didn't think anything of it--until they went away when I went off gluten. That was it until I got a DH-type rash (it was never verified by biopsy).

In addition, I have Hashimoto's THyroiditis, severe GERD, and skin allergy to metals--all of which calmed down after I went off of gluten.

When I have either mistakenly ingested gluten or (twice) cheated, I have had no discernable reaction.

I know too many people with diagnoses of lupus, MS, or Fibromyalgia--and all of them DO have symptoms typical of celiac, but see no need to be tested for it or to try the gluten-fre diet. While gluten doesn't put me through the hell that it puts many here, the knowledge that it is likely to lead to something far worse is enough to keep me on the diet with no complaints!

I am writing down Dr. Guandalini's name--I have relatives in Chicago (I grew up in Glencoe), and considering how hard it is to find even a decent doctor, let alone an excellent one, your recommendation sounds good! Thanks for the heads-up!

[rez]

I have heard excellent things about Dr. Guandalini. He's a pediatric GI and you don't even need a referral to see him. He came here from Italy and couldn't believe how underdiagnosed Celiac was. He has made it his mission to diagnose all the people out there. You can look him up on the Web. The Chicago Celiac Research Center has an excellent website, and he founded that center. :) We go next Weds and I will keep you all posted. :) Have a great day to all!