Introducing Myself, After 4 Years Of Fighting, I Can Now Say

[Breila 0]

without a doubt what I knew all along, that my son has celiac disease.

So here's my first question of many, how do you deal with the anger at the people that blew you off for so long when you just KNEW something was wrong with your baby, and how do you get over the guilt that you let them convince you that you were overreacting?

I'll admit it, I'm angry right now. Not at the diagnosis, I've come to terms with that. I'm angry with my husband and the peds for telling me I was over reacting. I'm angry with my husband's family for STILL not taking me seriously ("a little won't hurt him, you're too hard on him"). I'm irritated by the people who are so clueless about their food that they think that the cookies they made are okay for my son b/c they made them out of "white" flour, not "wheat" flour.

Most of all though, I'm angry with myself because I let all these people convince me that I was overreacting, that I was LOOKING for a problem when there wasn't one. He was "just smaller built" than his brothers, with a "sensitive tummy". My baby has been sick for almost SIX years, and no one believed me but me, yk?

Sigh, I don't know if this is the right place to put this, or if this is even anywhere near appropriate for a "first" post, LOL. But I've needed to vent this somewhere for several days now, and I just want someone to understand where I'm coming from and maybe tell me how to work through it.

Blessings,

Amy

[dbmamaz 0]

There was a post started w the title, you know you need a new doctor when . . . it started off mild, but got worse and worse. There are folks on this list who went over 15 years undx'd while going from specailist to specailist. Its so incredibly frustrating, it makes you wonder if there's a competent doctor in the world. But then others come on and say their doctor suggested trying gluten-free even tho the tests were negative and sent them here - or recently one who was uncertain to trust a dr willing to dx her on gene test and food response . . .we all congradulated her for finding such a great doctor!

I know the mama lion wants to go kill someone for hurting (even if somewhat indirectly) her baby. Its natural. And its so frustrating to be right all along and be made to doubt yourself. Many, many people in here have been offerred anti-depressents or sent to a psych ward when doctors couldnt find a cause for their illness.

So vent ahead, people here understand!

Oh, and I know at least one person has posted that her in-laws kept feeding her child gluten food, and many told her to let the in-laws know they will not be having unsupervised visits unless they are willing to abide by her dietary rules. Take this anger and use it to power your transformation in to a safe world for your little one

[debmom 0]

Don't apologize for venting. We all know how you feel. My daughter has had problems since she was a few weeks old and she wasn't diagnosed until she was 15. talk about guilt! But she has been seeing one gastroenterologist or another for almost 12 years. She was diagnosed with "megacolon" whatever that is, and Crohns, and then endometriosis and ovarian cysts to explain the severe stomach pain she had. Of course, until she went on a gluten free diet, none of her symptoms went away. Be grateful you have a diagnosis and be proud of yourself for not giving up until you did.

[Breila 0]

There was a post started w the title, you know you need a new doctor when . . . it started off mild, but got worse and worse. There are folks on this list who went over 15 years undx'd while going from specailist to specailist. Its so incredibly frustrating, it makes you wonder if there's a competent doctor in the world. But then others come on and say their doctor suggested trying gluten-free even tho the tests were negative and sent them here - or recently one who was uncertain to trust a dr willing to dx her on gene test and food response . . .we all congradulated her for finding such a great doctor!

...snip

Oh, and I know at least one person has posted that her in-laws kept feeding her child gluten food, and many told her to let the in-laws know they will not be having unsupervised visits unless they are willing to abide by her dietary rules. Take this anger and use it to power your transformation in to a safe world for your little one

Thanks, do you know where I could find this post? I did a search for it and came up blank. It sounds like an interesting read. I know my son's first ped. literally told me I was over reacting and that he was perfectly normal. Our newest ped. is wonderful, after hearing his history, she immediately suggested running the blood panel!

As for my IL's, well, there's a whole host of issues there that ensure my children will never be left unattended with them that go above and beyond foods, so there's no worries there. It just makes family events rather frustrating, that's all.

[Ursa Major 5]

While I completely understand your anger and frustration, your little guy is very fortunate that he has been diagnosed now. His growth can still catch up, and he will be healthy from now on. It wasn't your fault, you had no support in figuring it out.

I had symptoms from the age of three, and got sicker and sicker over the years. I finally diagnosed myself at the age of 52, 2 1/2 years ago and went on the gluten-free diet. NOBODY ever suspected celiac disease, I was just considered a complainer and overwrought, it was all psychological and in my head.

So, your son will have a much better life from now on and will avoid all the trouble and frustration and symptoms that would otherwise get worse and worse, probably resulting in triggering other autoimmune illnesses along the way.

I understand how frustrating inlaws can be. I have a mother-in-law who has never liked me, and who doesn't really care about seeing her grandchildren and great-grandchildren.

Fortunately, nobody in my husband's family would purposely feed anybody who is supposed to be gluten-free gluten (my family is in Germany, but they went out of their way to keep me safe when visiting for six weeks last summer).

[spunky 1]

From both what I've personally experienced and seen on this and other message boards, it seems almost everyone who eventually discovers s/he cannot eat gluten, regardless of age, has been through the blame game, hypochondriac game, the you-need-a-psychiatrist game, and most of all the denial game.

I think a certain amount of anger automatically comes with having been through all of this, whether because of your child or just yourself... it's not much fun to have been treated as though you were or are just being silly or imagining things when you were right all along, and the solution turns out to be so simple: get the gluten out.

I think society is happily in a state of gluten denial... it's such a big part of our diets that nobody will hear of it causing as much harm as we have experienced.

While I've never thought anger was ever helpful to anything in my own life, I've gotta say I have had trouble dealing with it considering what gluten did to me and how so many people refused to listen or believe it or just give the amount of credibility it deserves to either the severity of symptoms, how they disrupt someone's life, or the power of gluten to do so much. I can imagine I would be even more angry if it had been my child instead of myself.

I guess all we can do is find a safe place to vent... and be happy at least we know now (no thanks to anybody else, usually!!!) to be gluten free. Just as time heals physical damage caused by gluten, I think time eventually heals our anger over the way this all happens too. It's all a big process. I guess try to concentrate on the good things as they start happening.

[shayesmom 1]

Your reaction is perfectly normal and you have a right to be angry. There are several things that can come of this, and if you play your cards right, they will all be good. First of all, you have a formal diagnosis that will stand behind you from now on. So you won't have to deal with future doubts about the origin of the problems. No one will be able to tell you that's this is all "in your head".

Secondly, from this experience, you can now start learning to really trust your instincts as a mother. You KNEW something wasn't right and everyone else was wrong...including previous doctors. Nurture that instinct and ALWAYS follow through on it. When the dh and the inlaws complain, pull rank on them! None of them could see what was staring them in the face, but YOU did. You don't have to be angry about that....just factual in how you proceed from here.

As for the guilt....we all have it whether doctor or self-diagnosed. You aren't alone in having these feelings. The important thing is to realize that you did the best you could with the information and resources you had. Tomorrow is another day. And you can change things from this day forward. Don't judge yourself on things you can't/couldn't control. Judge yourself on the things you do that you CAN control. You CAN commit fully to this diet. You CAN make sure that your ds is not left with people who refuse to comply to the diet. You CAN get your son back....and in a much healthier place than he was before. You CAN refuse to let people blow your concerns off in the future. If a doctor isn't responding to your concerns, find another one who will. Become your son's advocate. Find ways to make this work for him within the context of family and school. You CAN find the positives in this. And once you do, the anger will subside. And when it does, you'll be able to look back at those people and laugh at how deluded they were/are.

For the thread on "You Know you need a new doctor when....", go under the Doctors section of the board and then try a search. I doubt it's too many pages back. We all add to it constantly!

And BTW, you've come to the right place for help and to vent. Not many people here get a firm diagnosis within weeks. Most of us suffered right along just as you and your ds did. This place can offer support in so many ways......so stay for a while. It's really worth it.

[home_based_mom 2]

I just want to add my 2 cents that this forum is the place to come for information. NEVER feel the need to apologize for venting. Most of us have vented at one time or another and can relate to your frustrations.

Search around the forum and for links to other sites where you can print out information for your inlaws about what your son can and cannot have, and what will happen to him eventually if he doesn't stay "clean."

Also, you mentioned brothers. You should consider having them tested for the celiac genes as well, even if they have not manifested themselves yet. Small stature and "tummy troubles" are far from the only symptoms. I suppose it would be a waste to point out to your inlaws that there is a reason for your son's small build and tummy troubles.

Anyway, welcome to the forum!

[shayesmom 1]

Correction, the thread is called Top Five Reasons to get a New Doctor. It can be found here: http://www.glutenfreeforum.com/index.php?showtopic=34299

[A&Z'S MOM 0]

Bless you AMY

I have felt the same way ever since the diagnosis of my kids three months ago.My family felt I was looking for trouble,I was a young mum[had my son at 16] and my kids are my life.My kids didnot fit the profile of a typical celiac,they were gaing height,but I felt something was missing.I tried to enrich their diets by gettiung good food but nothing changed their behaviour problems or the fact they looked pale and not like other active kids.I went to GI for my daughters constipation problems,and after everything came back clear,he asked if she has some other issues?I said asthma and low iron levels,so just as I was to leave his clinic, he said lets just run this blood test.My husband thought I was nuts that I asked for more tests to traumatise my daughter.Four days later doc called me,she tested positive.,My daughter got diagnosed first then my son who is 12 now.

Looking back my son did have exzema,he is always hyper,he had trouble putting on weight,he was fussy eater,unexplained tummy troubles sometimes,body ache.

Everyday I remind myself how I grateful I should be,I now have a diagnosis!!Thank God.But it does feel as if I am on my own sometimes bc family doesnot understand the implications of the condition.My husband is also coming around,slowly....I am so glad I found this forum too. Its hard but is possible...Pls guys pray that I find a nutritionist to help me along the way.

[fedora 0]

As a mother, I competely understand your frustration. I KNEW my daughter had Lyme disease before testing(my Bro-in-Law said it was probably a spider bite), and that my kids had whopping cough and were misdiagnosed by the doctor. My daughter had a huge growth delay this year(she was already small) and people say that is fine. And maybe she is just naturally moody they say. I am awaiting results on her now because I know something is up. Many parents on here understand no one listening to your mommy instincts. Many people understand how horrible it is to be dismissed. It is good to vent and process your anger and frustration so you can move on. I had to vent, sob, be angry. I am better now.

As a person who was a very sick kid, be grateful that you have found out now. Yes, it seems like years wasted ,but it could be worse. It took me 23 years of symptoms to find out. Your children are lucky to know while they are still growing up. While I was at my sickest my grandmother died after being sick with lymphoma for two years(yes,lymphoma). Two months later, my dad almost died from a ruptured colon(medical miracle that he didn't die, yes colon problems). I was so unbelievably ill, but somehow never got any real help in the middle of all the trauma. I had severe intestional issues and my dad was nearly dead, but no one considered a link there.

The best thing to do about clueless, but well meaning people, is educated them. Yes, they are uneducated, but some of that is not their fault. If they refuse to listen or learn then they are a problem not worth dealing with.

[dandelionmom 0]

I'm not really sure how to work through it. I'm still pretty pissed at times that it took two years to diagnose my daughter (and don't even get me started on the 30 years it took for me!).

It helps me to feel like I'm doing something to help so I'm working in my own way at spreading awareness so other people might not have to wait years for a diagnosis. Maybe that would help?

[cyberprof 63]

Amy, good for you! Your son is very lucky to have you as a Mom!

I wish that I could say that my son has a firm diagnosis, although in the short run it doesn't matter. He agreed to go gluten free for now, and hope that he starts growing without problems. I've told him that when he is 18, he can eat wheat and then do the blood test and/or biopsy, if that's what he feels he wants. His birthday is today- he's 15! I hope in 3-5 years that they have testing that is more reliable and doesn't require a tortuous gluten challenge!

~Laura

[Aleshia 0]

Thanks, do you know where I could find this post? I did a search for it and came up blank. It sounds like an interesting read. I know my son's first ped. literally told me I was over reacting and that he was perfectly normal. Our newest ped. is wonderful, after hearing his history, she immediately suggested running the blood panel!

As for my IL's, well, there's a whole host of issues there that ensure my children will never be left unattended with them that go above and beyond foods, so there's no worries there. It just makes family events rather frustrating, that's all.

http://www.glutenfreeforum.com/index.php?showtopic=34299

[Breila 0]

thanks for all your kind words and encouragement, I really appreciate it all and just knowing that others have BTDT with the doubts from others and such is reassuring that I'm not in some weird place, LOL.

Thanks also for the link to the thread. I did find it yesterday and spent some time perusing it. It's like so many posters said in that thread, it would be hilarious if it weren't true, but as it is, it just makes me so angry.

We are all going to get the blood testing done. I'm going myself next week (hoping that I'm not getting a clueless Dr., I had no primary care physician), and afterwards I'll be making appts. for my other boys. DH said he will get the blood test, but he's not rushing out to get it. He does have to be seen every six months for high blood pressure, so he says he will just request testing at his next appt.