Testing Done, Is It Normal To Be Mad And So Many Questions

[milkmommy]

I just got off the phone with my gi doctor and I now am filled with anger about how things have gone.

To recap.... I was diagnosed with ibs 18 years ago and have been told all my symptoms all this time have been related to ibs. I have been in pain and multiple life altering symptoms. I've been told so many times that it's all in my head or I'm exagerating. Lately it's been so bad I couldn't even leave the house so my dr sent me to a gi specialist to basically shut me up and a therapist to " talk about my anxiety/depression".

The first visit with the gi he said I am classic ibs but he will do some testing to be sure. Well...good thing he did!!!! I came back with high ttg so they did endo yesterday.

I just got off the phone and he told me he doesn't even need to see the biopsy. There is so much damage I need to immediately stop all gluten and I've probably had celiac all my life!!!! Basically the last 18 years of my life I could have been better if someone had taken me seriously!!!

The main reason I was doubted was because I am overweight and developed constipation.

I am so filled with questions now. Like is this related to why 2 out of 5 thyroid tests were abnormal? I've just been told it must be lab errors because when rechecked they are normal.

Or why I get low grade fevers everyday?? They brushed that off as unwitnessed by a dr so not true.

All my symptoms are now making sense and although I am relieved to know what I have. I am angry!! I actually believed for so long that I must be crazy.

[Debbie B in MD]

Oh my goodness I am so sorry for the pain and suffering you have experienced at the hands of incompetent doctors. I am praying that your new gluten free lifestyle will bring relief as quickly as possible. I am curious about the fevers. My father used to have them and then they went away after several months. I do not know if he has celiac. He is 86 and hasn't been tested. I asked my mom to have him tested the next time they do bloodwork. I don't expect at this point he would change anything. He has Parkinson's and Macular degeneration, both of which in my opinion could be from celiac.

Sorry, back to you. When was the last time your thyroid was checked? I would do it again. Make sure you get the report with the numbers. I am overweight too and have issues with constipation. Both are getting better with the gluten-free diet since January. Now that you are validated by results, I hope you will begin to heal both physically and emotionally. Best of luck in this new phase of the journey. Healing!!!!!

[kareng]

In your case, I think being mad is very normal. Not working around it would be not normal. I'll say a few cuss words for you.

Just a thought, but, if the damage and resultant crud ( pus, lymphocytes, etc) was so bad he could see it, maybe you have a bit of an infection in there, Thus the fever.Go gluten-free right away, and probably dairy free, too. It's hard to digest dairy when the part that digests dairy is damaged. You can add it back in in a few months. Probably really simple stuff for a few weeks, at least - rice, chicken, cooked veggies, applesauce, cream of buckwheat.

Good luck!

[cahill]

  On 4/20/2011 at 7:43 PM, milkmommy said:

I just got off the phone with my gi doctor and I now am filled with anger about how things have gone.

All my symptoms are now making sense and although I am relieved to know what I have. I am angry!! I actually believed for so long that I must be crazy.

This I totally understand,, I am also angry and sad and soooo many other emotions , I am an emotional basket case right now ,,,,

((HUGS)) to you

I would suggest talking to an endocrinologist about your thyroid, there is a strong connection between Hashimoto's and Celiac's

[IrishHeart]

You bet I can relate to your story....I heard all the same rap..."IBS", "fibromyalgia"....you can't have celiac, you're overweight!! snide comments... (yup. I WAS fat and alternated between constipation and diarrhea...but I lost 90 lbs. rapidly and with it, my hair, my muscle mass, my ability to sleep and think and, and, and....just to name a few things...) DOZENS of symptoms and debilitating pain because no one really listened to me. You cannot imagine the pain and burning I live with every day.

I was the walking dead and they just said...here, take this anti-depressant, have some xanax,..see a shrink....HUH?? No thanks! Basically, they symptom treat us all...and let me guess, you heard "depressed" "anxious", "menopausal". etc...what a bunch of crap!

If only ONE of them (and I saw many) had put it all together...no matter....I DID!!

My whole life would have been different!!...I might have even had children. (multiple miscarriages in 5 years) Makes me cry to think about all the lost years spent sick. For you, for me...for us all.

I GET it....and you have every right to be mad !!!

I feel for you,hon...I truly do!!

The medical community is so hopelessly clueless about celiac and what it does to the body, the brain, the muscles....

ARRGH!!

Ya think I have some anger issues?? yup. I do...I'm working on that.

As for you,hon..... I would suggest a good cry, a scream, and then....settle in and start your road to healing. No gluten and no dairy....and be well!!

Do have your thyroid tested!!...and make sure they test for B-12, folate and iron deficiencies.

Best wishes! ((hugs)))

PS...To get over my anger, I channel my energy while I heal by helping as much as I can on here. I am limited physically right now, but I believe I will get that back, too. This forum is a life saver. I just want my life back--as I am sure you do, too. My goal is to get well and get back to being vibrant, happy me....and some day, walk into each and every medical office where they treated me like I was "nuts" or said "it was just stress"...and say "I TOLD YOU SO!!!"

[txplowgirl]

Milkmommy, i've had this since I was 7. Been sick all my life. My parents, especially my father, as much as I loved him, would tell me all the time there was nothing wrong with me but laziness. I could sleep 15 hrs a day if I could, always had body pain and flu like symptoms every single day. Was diagnosed with clinical depression and Social anxiety disorder at the age of 10. Asthma, tingling and numbness in all my extremities. Married a jacka** that just made evrything worse, I've been on every anti depressant there is, nothing helped. Every single dr I ever seen, always precribed the meds, would never look for the cause. I had 7 miscarriages and 1 live birth but was deathly ill the whole pregnancy. And son was born 2 months premature at 5 lbs, 6 oz.

It got to the point I could not hold a job down, I was a cashier for wally world and I was only working 4 hrs a day and I could not do it. I had to quit. The last day i worked I could barely make it out to my car. When I finally sat in my car my legs were alternating between sharp stinging pains and numbness, lower back would spasm to the point I couldn't breathe. i finally went to dr and I litterally yelled at him. I wanted to know the REASON I was hurting so bad. I wanted him to investigate not just give me more meds. He just looked at me, shook his head and said in a very condecending voice told me he'd send me to a Rhuematologist.

If I had a dollar from every dr that told me it was in my head, I was making things up or some such bull i'd have a lot of money. I litterally thought I had cancer sence cancer runs in my family so bad.

The rhuemy dxd me with Fibromyalgia. I thought wow, i'm finally got a dianosis, but none of the medications, nothing she gave me helped. It wasn't until several months later that I read 75% of Fibro sufferers had Celiac or at least a gluten intolerance. The first time I came on this forum I read, then I cried. I cried for 3 straight days. Nearly every post I read was like me. I wasn't alone, this wan't in my head, I wasn't crazy.

I researched and read on here for 2 months making my plans. When I had everything in place I went gluten free and never looked back. I didn't get tested because I was finished with the dr's. I was 44 when I finally figured this out.

Mad at the dr's? Oh yea!, Sad? Yes. But, also thrilled to think that I could get better. Here it is 2 years later and i'm not 100% but i'm getting there. I look at it like this. I lost too much of my life being sick, I'm not gonna waste it on being mad at anyone. I'm gonna get even at everyone who told me I was lazy, making things up, being a hypochondriac, etc. How? By showing them the results. I have always been overweight since I was 14, 200 lbs or more and I could never loose it no matter what kind of diet I was on. Since gluten free I have lost nearly 50 lbs. To me, that is the best way of showing them. I smile more now than I have ever in my life. I am actually in a better place than I have ever been. No meds, no depression, no anxiety, no asthma, no numbness, tingling, brain fog, clumsiness, flu like symptoms, anemia, etc. I could go on and on.

You can get better! I'm sorry if this is long but I just want you to know, you can get better and I understand your anger but please don't let it overwhelm you. Think of this as a wonderful oportunity to start getting better. Here's a lot of

((((((hugs)))))) for you.

I wish you well. If you would like to talk just send me a pm, anytime.

Txplowgirl

[adab8ca]

  On 4/20/2011 at 7:43 PM, milkmommy said:

I just got off the phone with my gi doctor and I now am filled with anger about how things have gone.

To recap.... I was diagnosed with ibs 18 years ago and have been told all my symptoms all this time have been related to ibs. I have been in pain and multiple life altering symptoms. I've been told so many times that it's all in my head or I'm exagerating. Lately it's been so bad I couldn't even leave the house so my dr sent me to a gi specialist to basically shut me up and a therapist to " talk about my anxiety/depression".

The first visit with the gi he said I am classic ibs but he will do some testing to be sure. Well...good thing he did!!!! I came back with high ttg so they did endo yesterday.

I just got off the phone and he told me he doesn't even need to see the biopsy. There is so much damage I need to immediately stop all gluten and I've probably had celiac all my life!!!! Basically the last 18 years of my life I could have been better if someone had taken me seriously!!!

The main reason I was doubted was because I am overweight and developed constipation.

I am so filled with questions now. Like is this related to why 2 out of 5 thyroid tests were abnormal? I've just been told it must be lab errors because when rechecked they are normal.

Or why I get low grade fevers everyday?? They brushed that off as unwitnessed by a dr so not true.

All my symptoms are now making sense and although I am relieved to know what I have. I am angry!! I actually believed for so long that I must be crazy.

Oh my. I am screaming with you. And now we breathe.

I too was told I was crazy. It's stress. My endoscopy also had SO much damage he told me to stop gluten immediately as well. Visible to the naked eye terrible damage. I am 42 and he said I probably had it all my life.

So I stopped the gluten and here we are. ANd now you will stop the gluten and you will start to feel better. It won't be easy and it may take a long time but it is much easier to deal with things when you KNOW what you are dealing with.

hugs hugs and more hugs

[mushroom]

  On 4/20/2011 at 7:43 PM, milkmommy said:

They brushed that off as unwitnessed by a dr so not true.

I am angry!! I actually believed for so long that I must be crazy.

You have every right to be angry, as do all of us who have been similarly treated. The doctors need to wake up and realize what they DON'T know and forget half of what they think they know.. If the only things that are true are those witnessed by a doctor, God help us all Do they demand to see your diarrhea?? Your constipation?? Your passing gas??? These must also be not true if not witnessed

They apparently think whenever they see a woman patient that they are seeing a nutcase, it seems. Maybe they are taught in medical school to treat all women as if they are crazy - goodness knows, enough of we gluten sensitives have been told that over the years. I wonder if they tell the men they are crazy too?? At any rate, it is way too convenient a way to dismiss symptoms (and patients) when they don't have a clue. And as for your IBS-diagnosing GI, well, you know now that that is not a diagnosis so there can't be a classic set of symptoms for it. Classic for celiac, maybe, but not for IBS which is just a description of a set of symptoms (and even these vary amongst IBS diagnosers). Okay, just doing a mini rant here because I guess I am still angry too, but especially angry for you. I am so sorry you had to suffer through these indignities and distress for so long.

Now you don't have to go back to any of these people who treated you so poorly. You can choose to give your business to someone who gives a damn!

[milkmommy]

Thank you for all your responses!! It's nice to know I'm not alone in all this!!

I hope all my symptoms go away. Even if just75% I would be thrilled.

It's so sad to hear of all the others that have suffered from misdiagnosed celiac.

I am so grateful to this forum and everyone here.

It's a very confuses time and I'm sure I will be posting many questions. Eventually I will be more educated in all this and be able to give back!!!

Now to start the healing. And get my daughter screened. She is only 2 but barely eats or sleeps, always says sore tummy, has constipation problems. Because of my "anxiety disorder" diagnoses the dr thinks I am overreacting!! Yeah right!! Cause it's perfectly healthy for her to wake every hour and still get most of her intake from breastmilk.

Sorry. I'm ranting again. Lol

[hnybny91]

I was very angry when I put all the peices together too. I have never had a "formal" diagnosis but I don't need one. You do become less angry over time but it takes awhile. Just try to focus on the positive that you finally have some answers and you can look at the doctors that doubted you and say, "IN YOUR FACE!!!"

Oh, and I ran a low grade fever every day for a year! It went away (like the other 100 symptoms did...ha ha) after I was gluten free a couple of days.