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honeypond

Angry With Myself

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I am so struggling lately with just feeling resentful and angry about my son's problems.

He has seen 5 different doctors, 2 of which were gastroenterologist, and all of them just treated symptoms. He has had extremely severe constipation since he was a four months old, and has been on laxatives and stool softeners since then. He is going to be 4 next month. And I found out about celiac in March. He is still undiagnosed, and I feel like such a failure.

I just want to bawl. People ask me why I have him on a restricted diet now, and I say celiac, but I am so self conscious of the fact that he is undiagnosed I always end up telling them that. And then I get the roll of the eyes... they no longer believe me.

He has been Gluten/Dairy free since March and for the first time in his life is off of stool softeners. He no longer has the bloated belly, that people used to always point out to me, and laugh about. He has gained weight and inches, in just a few months. We are still having a few behavior issues that come and go, I think because of cross contamination. But for the most part he is doing amazingly well.

But his mommy on the otherhand... I am sooooo angry... with friends, with family... but mostly myself. 4 YEARS and I still don't have a FINAL diagnosis. 4 Years of my baby being sick, and I didn't push hard enough. I look at pictures of him when he was a baby with this HUGE belly and I just get sooooo angry!! Why can't anyone else see that this is not normal. My biggest struggle right now, is with a friend of mine. Her new baby is having constipation issues. And she has gone to every length to get his problem figured out. And is still working on it. I AM JUST so resentful of that. She complains about doctors running this test and that test, and I just want to SCREAM, "COUNT YOUR BLESSINGS at least they are trying to figure it out" I have had 4 stinkin' years of doctors telling me that he'll grow out of it, just keep him on that stool softener, a little constipation is nothing to worry about.

I don't know what to do to get over this anger!! I know my family is getting tired of it, because I am always talking about Noah's issues trying to somehow feel validation.

I just don't know what else to do....

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I think anger is part of the process I went through to get to acceptance. Let yourself feel angry (maybe find a healthy way to express that anger). And it helps me to keep reminding myself that sometimes things can suck without being anyone's fault.

And as hard as it is to handle, you need to forgive everyone (especially yourself!) for the 4 years it took to figure this out. The average is something like 10 years. So you're way above average. :)

You're helping your son NOW and that's what matters.

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I would also say anger is part of the natural grieving/healing process. It seems very normal to be angry that your son is sick, to be angry that the doctors didn't figure it out, to be angry that they couldn't give you the diagnosis you needed. But you have dietary response, that's a valid diagnosis. Unfortunately, you were the one who had to give the diagnosis, not the doctors. You have no reason to feel guilty telling people your son has celiac - he's obviously got some form of gluten intolerance.

I do occasionally feel anger at several doctors who failed to diagnose me over the period of about eight years. What was the point in going to all those doctors if I was just going to diagnose myself??? I have no problem saying I have celiac even though I didn't have a positive blood test, but I do feel frustration over some of my joint injuries. What do I tell people? "My arm hurts, I don't know why"? That just sounds not very serious. I'm getting close to wanting to make something up so it's easier to explain. And if I'm serious about working towards a solution to the injury, maybe making up a diagnosis for me isn't so wrong. You know your son has some form of gluten intolerance. So calling it celiac and taking him off gluten and getting his health back is the best thing to do.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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You have much to be angry, no, furious about.

And it sounds like your friend's doctors are just as clueless as yours. They might care more than yours did, but they don't seem to have any idea that your friend's child might have celiac disease.

If your son's symptoms are improving on the gluten-free diet, you shouldn't be angry with yourself--my goodness, YOU figured out what 5 doctors couldn't! Between them they have, what, 30 years of schooling and I don't know how many years of experience, but they didn't get it, YOU did!

You are a wonderful mother, and don't let stupid doctors or ignorant friends make you second-guess yourself. Tell them it's celiac, or tell them that it's a wheat allergy (not strictly true), or tell them whatever YOU are comfortable with, and remember, the important things are,

#1) your son's health is improving

#2) one of your friends, or someone they know, might be going through the same thing, and if you are unsure, iffy, and come across as off-the-wall, what you have learned won't be taken seriously, and someone else's child will continue to suffer the way yours did for 4 years.

Have confidence in yourself--you have been RIGHT all this time!

Come to this board for validation--we've all been through the same doctor-made hell as you, and here we share knowledge--and anger!

As you become more confident with what you know, your doctors, friends, and relatives should come to respect you. (If they don't, get new ones!)

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I am in the same boat as you are. I know that my two kids and I have it, but none of us have an official diagnosis. My daughter was tested at 18 months old but it came back neg. I had started her on the diet while waiting for test results and she improved so much, I said screw the results-they were not accurate! I had a really hard time convincing my Mom for a year. Be persistant and be confident. It's not till I finally got really angry that I said to myself " I am their mother and I know them better than anyone. I've seen what gluten does to them and I will NOT back down to people who don't know anything about this."

Even if you had run a celiac panel, they are not as accurate as the doctors like to believe. Just read other testimonials on this site. Many do not have an official diagnosis, but the hell they have been through is proof enough. Trust yourself and don't back down to others. You're an awesome Mom! Best of luck to you.

Stacy

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hi, it is okay to be angry, feel it, process it,and important to move on from it.

I was the sick child. I was dismissed, my dad never acknowledged there was something wrong with me and my mom was so overwelmed with terrible family situations that she did not fight for me.

Finally at 19 I gave up wheat. After I got better I went back on it for a few years. I had to give up wheat again at 27. Finally after 23 years of symptoms,at age 32 I gave up gluten. My doctor suggested celiac and dismissed it when I was 27.

I was PISSED. I have dealt with the issue of my being a sick child before, but now I know what was wrong with me. It wasn't all the randomn things the drs. suggested. So once again I processed it, got mad at them and myself(denial for years) and have done a fairly good job of letting go(I think).

I say this because your son is so much luckier than some of us who have been sick for soooo long.

You are a good mom. You have been trying. If you need a diagnoses for school try to find a dr who will diagnose on diet. I told my dr no way was I eating gluten again and he said ok. Based on my dietary response he said I probably was celiac. He realized that if I was that determined to never eat it again than being gluten free must be working for me. Why would someone go off gluten if it didn't help?

I have a Noah too, he is seven.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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You know the same thing happend with my little girl. She is now 5. She was always constipated. In and out of the ER. She had to have lots of enimas. Its was sooo bad. She was on the same meds just to treat. Now that both of us have been diagnosed with Celiacs life has gotten better. Try putting him on the gluten free diet and see how he does. When Alexa went on it she got sooo much better and happier.

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I also wanted to add. I went thro the same thing with family. My parents were great always there to help. But her dads parents ohhhhh they make me sooo mad. They dont think she has it. Even tho on the diet she got better. They will sneek her good with gluten in it behind my back and make me feel stupid for getting upset. I finally had to tell them that if you do it again you can not see her anymore. I dont understand why anyone would want to make a kid sick. And that is what they do. I feel like when I talk to them they are sick of hearing about it.

One thing I had to understand is that no matter how tired ppl are of hearing about it.....its whats best for my little girl. I understand how you feel about being mad. Alexa was 5 when she was diagnosed and it made me feel so bad. Being on all those meds and being told that she would grow out of it. She wont. Alexa is undiagnosed. I have it and with all the issues she has had my doctor told me she does too. And on the diet she got better. We dont have insurance so I cant get her tested untill we do. But I know she has it. And I think becasue she is undiagnosed that is why her grandparents dont think its true. But no kid should have that much trouble using the bathroom. And the behavoiral issues oh man. But like I said the diet does help a lot!

You just need to keep your head up and know that you didnt do anything wrong. You know my whole life I was on aderal and ridalien for ADHD. My whole life and now they know that I dont have ADHD I couldnt eat gluten. All I needed was a diet and I would have gotten better. My parents feel like crap about that. I wasnt diagnosed untill I was 23. I was on pills for that long and I never needed to be. So you have to know that you are not alone. What matters now is that you are doing whats right by him and helping him. I wish you the best of luck!

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I just wanted to say thank you to all of you. It helps so much to here from others, and to feel some sort of validation from all of you. Sometimes the anger just wells up until I feel like I am going to burst!! I wish I could just accept and go on... in front of everyone else that is just what we are doing... but inside I just want to go ballistic on a few doctors and friends. And I feel like I am constantly beating myself up for not figuring it all out sooner, I know that isn't the right thing to do. I know that I am not to blame, but I am having such a hard time letting myself off the hook. Thank you all for your kind words and encouragement.

BTW, I realized after posting that he has been gluten free since february not march, because I joined this site the same day I made the decision to take him off of gluten.

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Sometimes the anger just wells up until I feel like I am going to burst!! I wish I could just accept and go on... in front of everyone else that is just what we are doing... but inside I just want to go ballistic on a few doctors and friends. And I feel like I am constantly beating myself up for not figuring it all out sooner, I know that isn't the right thing to do. I know that I am not to blame, but I am having such a hard time letting myself off the hook.

Maybe a good way to channel that anger is to write a letter to each of the doctors explaining how much better your son is doing on the gluten-free diet and include some information about the inaccuracy of testing in young children, the risks of letting a kid go undiagnosed, and the variety of symptoms. Your letter may at least help some other kid get diagnosed more quickly.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I'm just going to add one more thing: the anger, guilt, depression, all of that lessens after awhile. I was personally a little more overwhelmed with guilt rather than anger with myself (a ton of anger for others, though, particularly our pediatrician), but I can say it does get better. It's been about 2 1/2 years since our son was diagnosed, and although I can at times wallow in some self-pity (why can't I have convenience, too, like all the other moms and just go to McDonald's to get some chicken nuggets???), guilt (accidental glutening - the worst!!! - I "poisoned" my child and we all have to pay with both physical and emotional problems for a week), and anger at other family members (seriously, our kids are getting more sensitive to gluten because I'm not exposing them enough to gluten? Are you kidding me? That's what put our son in the hospital in the first place!), really, it's not a part of my daily, weekly, or even monthly life with my family. My kids are healthier than most, happy, active, friendly, and more aware (in a good sense) of food. And my son doesn't even flinch at other kids getting regular cookies or cake when he doesn't have anything. I'm not trying to invalidate your feelings at all - I truly empathize and know EXACTLY how you feel. I'm just letting you know that happier days are coming, I promise! In the meantime, forgive yourself because staying in that anger/guilt doesn't help anyone, but feel free to yell at anyone else who needs it ;)

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Maybe a good way to channel that anger is to write a letter to each of the doctors explaining how much better your son is doing on the gluten-free diet and include some information about the inaccuracy of testing in young children, the risks of letting a kid go undiagnosed, and the variety of symptoms. Your letter may at least help some other kid get diagnosed more quickly.

This is what I was going to suggest! B) Include details, photos, and the emotional strain all this has put on you. Send 2 copies to each doctor - one for them to keep, and one to put in your son's file. Don't worry about how many pages it takes - just do it. It will be important documentation, and it will help you to heal.

Fiddle-Faddle is right. You figured out what 5 doctors with all their expensive education couldn't! IMO, that so many doctors tell so many moms their kids' symptoms are "normal" tells me doctors are seeing far too many cases of celiac and are too ignorant and uneducated to recognize what they are looking at. They think "OK, it isn't average but there is so much of it that it just can't be abnormal!" WRONG!! Good for you for trusting your mother's instinct and common sense!

When people ask why your son is on a restricted diet, tell them it's because if he eats wheat/gluten he has all these problems (feel free to itemize them) and when he doesn't eat wheat/gluten, he doesn't have any of those problems. Tell them your decision is based on 4 years of daily observations, is best for him and his health, and because you love him, the decision is not negotiable. Ask those who have known you for awhile, "How can you not see the difference?"

Don't back down and don't beat yourself up. You're doing a great job. :)


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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I am so struggling lately with just feeling resentful and angry about my son's problems.

He has seen 5 different doctors, 2 of which were gastroenterologist, and all of them just treated symptoms. He has had extremely severe constipation since he was a four months old, and has been on laxatives and stool softeners since then. He is going to be 4 next month. And I found out about celiac in March. He is still undiagnosed, and I feel like such a failure.

I just want to bawl. People ask me why I have him on a restricted diet now, and I say celiac, but I am so self conscious of the fact that he is undiagnosed I always end up telling them that. And then I get the roll of the eyes... they no longer believe me.

He has been Gluten/Dairy free since March and for the first time in his life is off of stool softeners. He no longer has the bloated belly, that people used to always point out to me, and laugh about. He has gained weight and inches, in just a few months. We are still having a few behavior issues that come and go, I think because of cross contamination. But for the most part he is doing amazingly well.

But his mommy on the otherhand... I am sooooo angry... with friends, with family... but mostly myself. 4 YEARS and I still don't have a FINAL diagnosis. 4 Years of my baby being sick, and I didn't push hard enough. I look at pictures of him when he was a baby with this HUGE belly and I just get sooooo angry!! Why can't anyone else see that this is not normal. My biggest struggle right now, is with a friend of mine. Her new baby is having constipation issues. And she has gone to every length to get his problem figured out. And is still working on it. I AM JUST so resentful of that. She complains about doctors running this test and that test, and I just want to SCREAM, "COUNT YOUR BLESSINGS at least they are trying to figure it out" I have had 4 stinkin' years of doctors telling me that he'll grow out of it, just keep him on that stool softener, a little constipation is nothing to worry about.

I don't know what to do to get over this anger!! I know my family is getting tired of it, because I am always talking about Noah's issues trying to somehow feel validation.

I just don't know what else to do....

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It's totally normal--all these feelings your are having. My daughter struggled with bowel problems from birth. She had "colic" as an infant (cried for the first 4 months of life straight!) and had terrible constipation (she only went about 3 times a week--and it took FOREVER on the potty).

I had lost count of the number of times I took her to the pediatrician. She began complaining of tummy aches about 4 years ago--she was 5 then. We went to the doctor many times--did blood tests, x-rays, ultra-sounds--you name it! They all came back normal. Her doctor said, "Kids sometimes can't distinguish between gas, hunger and just plain butterflies in the stomach feelings." She put her on acid reflux meds (which did nothing) and said she'd grow out of it.

This year (my kid is now 9) the tummy problems became unbearable. It was becoming harder and harder to get her to stop complaining. Giving her tums and malox were no longer working. She began to complain of belly aches at least 4 to 5 times a day! Then, one night after bath, she bent over to pick up something she had dropped. I swear I could count every bone in her spine. She had gotten so skinny--it made me cry. I took her back to her doctor and said, "SOMETHING IS WRONG!!". When her doctor weighed her, we discovered that she had lost 6 lbs in about 6 months. It doesn't sound like much to most women (I'd love to lose 60 lbs!) but when you're a tall, skinny 9 year old it's a lot. Her doctor agreed that something was wrong. She immediately scheduled a blood test which finally showed a positive result for celiac. After that test, she had us do a biopsy of the small intestine to confirm celiac. It was also positive.

We have now been gluten free since Feb 11th and my daughter has gained about 5 lbs, her focus level in school has improved 100 times and she no longer complains of belly aches (she also goes to the bathroom EVERY DAY).

I wanted to tell you this long story because I did have tests run, I did try to figure it out and it still took 4 years to get a real answer. I asked her doctor why the results were negative 4 years ago. She said it was most likely in the very beginning stages and was not able to be detected at that time. She also said that doctors are just now learning and recognizing celiac. She said the GI system is hard to diagnose.

If you decide to have your son tested, you will have to have him back on the gluten for a while. Since he's been gluten free, the test will most likely come back negative for celiac. You may want to ask your doctor how long he'll need to be back on gluten to give you a correct test result. OR you may decide that being gluten free has helped and don't want to risk him not feeling well because of getting back on gluten to suffice the test.

Whatever you decide, don't beat yourself up! You are not a doctor--you've taken him to doctors like you're supposed to. You took the initiative and took him off gluten. If it's too much of a pain to explain celiac to friends and family, you could just say, "We've found that a gluten free diet makes him feel better so we stick to it.".

Good luck! and please feel free to contact me if you have any questions--we've tested many gluten-free products and my kid is an expert on what tastes best! :D

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Honestly, guilt and anger are natural things to feel when we've seen our kids struggle for years and recently discover that there's been a serious problem at work. Hindsight is always 20/20. But you do need to realize that hindsight isn't available while living in the moment. ;) It sounds to me like you really did try to find answers all along. You did all of the right things and you did continue to pursue for answers. But you can't control what type of education your doctors have, nor can you control the experience they've gained in their profession. If it's of any consolation, I also went through 5 pedis and 2 pedi GI's only to end up discovering this issue on my own. It's been almost 4 years since we went gluten-free and I still feel guilt here and there (though not at all like before). And my anger is directed back on the medical community.

I think it's very important that you work to get your child well again. And once you feel you've found some balance in daily life, find a way to release and redirect the anger you're feeling. Think about how you can challenge that negative energy and turn it into something positive that will benefit you, your son, your family, etc.. For me, this means that I post on various mainstream parent boards and look for other potential celiacs. I try to help others get a dx more quickly and encourage them to always follow up with a gluten-free diet once they've completed the testing to be 100% sure that gluten isn't an issue. I also offer support via recipes, articles and substitute gluten-free products. I cannot begin to express the intense gratification that I feel when I get thank you e-mails and cards for helping another family find their way to the answer to their health problems. It underscores the fact that my dd and I didn't suffer in vain and it saves another family a lot of pain and worry.

The point is....beating yourself up isn't going to change anything that you experienced in the past. It's okay to be angry and to feel guilt, but at some point you need to turn the negatives into positives in order to really live and enjoy the present as well as the future.

Also, I would highly encourage you to share your story with others. Your immediate family and friends may not be ready to listen, but there are plenty of others who are struggling and who would benefit from hearing your experience. Some boards have a health and safety section that is hosted by practicing pediatricians. There, you could not only help educate families who don't know about this disease, but also the medical community which is quite guilty of underdiagnosing and over-prescribing. You could help on many different fronts should you choose to. And of course, you are always safe and welcome to vent here as we all do. :D This community is the best sounding board I've ever come across and the advice shared always helps keep things on track (at least for me).

I'm glad that you have some answers for your son. Things will work themselves out and relatives and friends will eventually come around. It just takes time.


Vicky

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