Recently Diagnosed Celiac; Relieved, Angry And Sad

[kayo]

I finally got diagnosed with celiac this past week. I have been gluten free since last summer and the Enterolab results came back with a positive for gluten intolerance (and soy) though previous blood work was negative. I also don't have the classic genes. Other than that I pretty much have a text book case according to my new (and fabulous) GI doc. Finally someone who understands, speaks my language, validates me and my symptoms. I'm relieved.

But I'm in a funk.

It finally sunk in that I have likely had this all my life and it makes me so SAD. I have RA and I practically live at the doctor's offices. I go in every few months for check ups and bloodwork. In nearly 40 years no one has ever tested me for celiac even though I had most of the symptoms and I have complained of GI issues and questioned Crohns, colitis, ulcers, etc only to be met with one road block after another. I live near a major city and go to an award winning hospital that has an autoimmune center and still... nada. This is when I get more MAD than sad.

I brought up celiac with my rheumy and he knew very little about it. I knew more than he did! What's the point of having an autoimmune center then??

Had someone tested me for this 5, 10, 15, 20 years ago I think about what my life could have been like. I'm generally not a 'what if' kind of person and I roll with the punches but this is a pretty damn big 'what if'. It could have meant less RA damage, less surgeries, less issues about my weight (I was an underweight/undernourished toothpick), less headaches, GI issues... etc. IBS is not an illness! It's a label lazy doctors slap on people so they can shove us with pills.

You get the idea. I know many of you have struggled with the same lack of diagnosis and treatment over the years as well. I'm thrilled to finally know what's going but I have myself to thank for that, not these award winning docs and hospitals. I went on a gluten-free diet on my own and got tested on my own. The validation of a diagnosis is great and I'm glad I have a good GI doc in my corner finally but I did all the work!

My questions > How do you deal with the sudden sadness and anger that comes up after having finally been diagnosed? Especially when you look back and think of the years lost due to poor health? And doubly especially when you have access to top medical centers and are pretty pro-active about managing your health?

[sandsurfgirl]

HUGS! I'm 40, diagnosed 7 weeks ago and have had this all my life.

Honor your grieving process. You will go through so many emotions. Journal them and come here for support. Talk to some people you can trust. It is a grieveing process just like as if someone died, the 5 stages of grief and all.

I am still processing a lot of stuff. The hardest part was the awful withdrawals on top of my emotional baggage.

When you start feeling better the emotions get better, but I was just chatting with an old college friend I found on Facebook a few nights ago and ended up sobbing again when I was telling him how sick I was in college and how I hid it from all of them. He was one of my roommates and I kept it secret how much I was suffering.

It gets better over time. Give yourself time to heal emotionally as well as physically.

[Butterfly51]

I finally got diagnosed with celiac this past week. I have been gluten free since last summer and the Enterolab results came back with a positive for gluten intolerance (and soy) though previous blood work was negative. I also don't have the classic genes. Other than that I pretty much have a text book case according to my new (and fabulous) GI doc. Finally someone who understands, speaks my language, validates me and my symptoms. I'm relieved.

But I'm in a funk.

It finally sunk in that I have likely had this all my life and it makes me so SAD. I have RA and I practically live at the doctor's offices. I go in every few months for check ups and bloodwork. In nearly 40 years no one has ever tested me for celiac even though I had most of the symptoms and I have complained of GI issues and questioned Crohns, colitis, ulcers, etc only to be met with one road block after another. I live near a major city and go to an award winning hospital that has an autoimmune center and still... nada. This is when I get more MAD than sad.

I brought up celiac with my rheumy and he knew very little about it. I knew more than he did! What's the point of having an autoimmune center then??

Had someone tested me for this 5, 10, 15, 20 years ago I think about what my life could have been like. I'm generally not a 'what if' kind of person and I roll with the punches but this is a pretty damn big 'what if'. It could have meant less RA damage, less surgeries, less issues about my weight (I was an underweight/undernourished toothpick), less headaches, GI issues... etc. IBS is not an illness! It's a label lazy doctors slap on people so they can shove us with pills.

You get the idea. I know many of you have struggled with the same lack of diagnosis and treatment over the years as well. I'm thrilled to finally know what's going but I have myself to thank for that, not these award winning docs and hospitals. I went on a gluten-free diet on my own and got tested on my own. The validation of a diagnosis is great and I'm glad I have a good GI doc in my corner finally but I did all the work!

My questions > How do you deal with the sudden sadness and anger that comes up after having finally been diagnosed? Especially when you look back and think of the years lost due to poor health? And doubly especially when you have access to top medical centers and are pretty pro-active about managing your health?

[Butterfly51]

I am 58 and just found out 5 weeks ago I have celiac. I went through the sadness also. I felt like I could not eat normal foods and the fatigue and low energy level were horrible ! I found someone from a celiac group and talk to her by phone and it was the best thing I did for myself. She told me about Kifer which is a probotic that restores the natural bacteria to the intestinal tract. I drank 3 glasses a day and in three days I had a turn around. Energy up no stomache pains and no dirrhea. The fog lifted from my brain and I have started living again. I am now put foods back in my diet after eating a simple diet of chicken and fish and plain potatoes. Whenever my stomache feels queasy I drink a glass. I also have been taking digestive enzymes after eaing. I attribute my feeling better with the Kifer! I can only live for today because I can change my attitude for today. For me to live in the past is a waste of time because I can't change the past. I want to get every moment I can from the present. I don't want to miss out on anything anymore. So hang in there and get in touch with your local celiac group for encourgment. Love You

[txplowgirl]

Hi Kayo, I can definitly relate.

Here I am 45 and I can remember when I was 7 crying to my mother about how bad I hurt, felt sick off and on all the time.

My father would tell me I was just being lazy, it was all in my head. etc. I was in an abusive marriage for 21 years and and he would make fun of me or make things hurt worse. Dr's told me it was this or that, you name it. Dx'd depression, anxiety, etc, but wouldn't really listen until Aug of 08 when I seen a rheumatologist who dx'd me with fibromyalgia and RA. A few months later I found out about the gluten.

I do the what if's a lot myself. Wondering how I would feel healthwise if I had been dx'd back then.

I've been through the grief statges finally, It does get better, the old cliche of it does get better with time is true. You just have to get throught it slowly but you will feel a lot better on the other side. Hang in there.

Vicky

[newgfcali]

Kayo - you came to the right place for support. I, too, have just been diagnosed by Enterolab in February, and have been hanging out here at this forum ever since.

There are so many wonderful, supportive, knowledgeable people here and talking with them will make you feel so much better about the whole situation. Yes, there will be anger, sadness, depression, denial... the classic stages of grief, as sandsurfgirl mentioned. But you can lean on the people here and they'll prop you up, answer your questions, let you cry on their communal shoulders and make you laugh when you need it.

I can't think of a better place for you right now than here.

{{{Hugs}}}

[AlysounRI]

[Hi Kayo:

I think most of us here understand your frustration.

I was "diagnosed" with a wheat intolerance back in 2003 by a naturapthic doctor after going through 15 years or so of feeling very poor, and having lots of intestinal distress.

I remember thinking how do you give up wheat?? It's **everywhere**!!!

I avoided all wheat and felt a lot better. But then I fell off the wagon.

So now 7 years later, it reached toxic point again and I gave up gluten entirely as an experiment.

It was better than when I gave up wheat.

But I remember doctors telling me that I had IBS, offered to write me a scrip for antidepressents and then telling me to give up all acidic foods and try to do some stress relief.

No "let me send you to a GI specialist ... let's do some allergy tests ..."

I'm back on the gluten now as I am getting tested at the end of the month.

But I already know what I am going to do if the testing comes back negative.

It is a tough diagnosis, Kayo, but there is much more knowledge about this even from 7 years ago, I've found!!

I think of the late 90s when all I could keep in was water, yoghurt and rice ... I think of that and it makes me angry but I am also glad that gluten intolerance/celiac is getting more known.

Look forward to the future when you will be able to eat without feeling like crap afterwards and when you will begin to feel strong and healthy and you be able to get nutrients from your food instead of

fighting with it. I also hope that it will make your RA feel better and diminish that too. Gluten can poison almost all your bodily processes so hopefully ALL of you will feel a lot better eventually.

If it's helpful for you, you can find a support group - you will meet many more like you and there is strength in numbers.

Hugs and health,

~Allison

[mamaw]

Yes, it is very sad that people have to sometimes go through years &years of illness before they get answers that are correct. I think most of us have been there.... it is okay to go through a grieving process after all you are or have lost an important part of your being-- FOOD. What we all were taught as youngsters we now have to toss to the wind & re-program our minds to a new lifestyle. It will all fall into place but it does take time & commintment...

Start out with things you know are gluten-free plain meats, fruits, veggies adding your own spices (McCormick's clearly labels gluten-free), once comfortable with that move on to adding some things. Buy yourself some pre-made goodies , pretzels & junk food so you don't feel deprived...

Grieve for awhile but then move on quickly...and DO NOT CHEAT, it will only make things worse.

You can find a wealth of info on this site from past posts...

blessings

mamaw

[ravenwoodglass]

Welcome to the board. There are lots of us who share the anger and grief. It gets better with time. We can not regain those lost years. All we can do is look forward. I have had celiac since I was 5 years old but wasn't diagnosed until I was in my late 40's. Life would have been very different if I had been diagnosed in childhood but the biggest struggle for me was the impact my illness had on my childrens lives. Now all I can do is look forward to enjoying the things I should have been able to enjoy with my children with my grandchildren instead.

If you need to don't be afraid to work out those feeling with a therapist. You have a right to be angry. But you also have the right to get past that anger so you can really enjoy the healthy life you will gain.

I hope that your RA does the same thing mine did, go into remission. I don't mind the ugly joints so much now that they move freely.

It is tough at first but hang in there and be as strict as you can possibly be. Your in the right place to learn what you need to and get support on the bad days. Read as much as you can and ask any questions you need to.

[kayo]

Thank you all so much for your responses. Feeling a bit better today.

I'm comfortable with the diet. I love to cook so I have embraced the challenge. I haven't had any temptation to cheat. It hasn't even crossed my mind. I feel too good being gluten, soy and dairy free to risk it for a few moments of indulgence. Plus, the homemade gluten-free/sf/df food I can make tastes a whole lot better than anything that might come in a cardboard box.

What upsets me the most is the lost years going from doc to doc, the damage to my body (known and unknown) and the likely exacerbation of my RA which resulted in 20+ surgeries in a 10 year time frame. I lost a good chunk of my youth to feeling like poop. It feels so unfair. I think about what 39+ years of gluten ingestion has done to me. I think about if there will be cancer in my future due to the lack of diagnosis and proper diet. I couldn't be more proactive about my health, more assertive, more educated and dedicated. I have access to the best hospitals and docs. And yet here I am. It feels like a bad joke.

I accepted my RA a long long time ago, accepted it was my lot to bear. I rolled with the punches. I soldiered through the meds, tests, surgeries, pain, fatigue, etc. But here I am with a celiac diagnosis and I think if only someone had discovered this it could have saved me so much damage and my quality of life could have been so much better. That's what is pissing me off.

Pity party - party of one!! At least I can laugh at myself.

You're all right. This is a grieving process. That makes sense. There will be ups and downs. I still want to yell at someone though. :-)

Thank you all - your support means so much to me. You have no idea!

[detritus]

Thank you all so much for your responses. Feeling a bit better today.

I'm comfortable with the diet. I love to cook so I have embraced the challenge. I haven't had any temptation to cheat. It hasn't even crossed my mind. I feel too good being gluten, soy and dairy free to risk it for a few moments of indulgence. Plus, the homemade gluten-free/sf/df food I can make tastes a whole lot better than anything that might come in a cardboard box.

What upsets me the most is the lost years going from doc to doc, the damage to my body (known and unknown) and the likely exacerbation of my RA which resulted in 20+ surgeries in a 10 year time frame. I lost a good chunk of my youth to feeling like poop. It feels so unfair. I think about what 39+ years of gluten ingestion has done to me. I think about if there will be cancer in my future due to the lack of diagnosis and proper diet. I couldn't be more proactive about my health, more assertive, more educated and dedicated. I have access to the best hospitals and docs. And yet here I am. It feels like a bad joke.

I accepted my RA a long long time ago, accepted it was my lot to bear. I rolled with the punches. I soldiered through the meds, tests, surgeries, pain, fatigue, etc. But here I am with a celiac diagnosis and I think if only someone had discovered this it could have saved me so much damage and my quality of life could have been so much better. That's what is pissing me off.

Pity party - party of one!! At least I can laugh at myself.

You're all right. This is a grieving process. That makes sense. There will be ups and downs. I still want to yell at someone though. :-)

Thank you all - your support means so much to me. You have no idea!

Welcome to the community:) I think what you're feeling, and what we've all felt, is why it is SO important for us all to raise awareness about this disease, even through just raising the awareness in the people around us. Hopefully ,one day celiac sufferers will not have to go through decades of distress before receiving the answers they need.

[Salax]

I feel for you and I must say I think I am something of a rarity here. I did not go through the grief process like most of you did. Perhaps it is just my character. But I can tell you I was pissed. Pissed at the doctors that didn

[Bobbijo6681]

[quote

I don

[kare101]

I've also been recently diagnosed. Only about a week ago...Had an endoscopy yesterday. The dr took several biopsies. Said he'll give me the results in 2 weeks. Also said he found some damage to my small intestine just by looking. I'm 39 yrs old, and I'm sure I've had this all my life, but for some reason the last 3 weeks I have been so sick--terrible nausea, vomiting, diahrea, and the worst thing is a feeling of extreme fatigue and weakness along with insomnia. Starting to feel depressed about the whole thing. Don't know anybody else who has this. I hope this forum helps. It seems to be a place where everybody supports each other. So glad I found it. This is my first post. I feel for anyone else who is going through this. It's difficult finding out I have a disease that I'll have to live with the rest of my life...I keep telling myself it could be worse. That helps a little. I imagine I have started the grieving process that some of you have talked about. I hope everyone else who is going through this difficult beginning time will find this forum helpful.

[ravenwoodglass]

I've also been recently diagnosed. Only about a week ago...Had an endoscopy yesterday. The dr took several biopsies. Said he'll give me the results in 2 weeks. Also said he found some damage to my small intestine just by looking. I'm 39 yrs old, and I'm sure I've had this all my life, but for some reason the last 3 weeks I have been so sick--terrible nausea, vomiting, diahrea, and the worst thing is a feeling of extreme fatigue and weakness along with insomnia. Starting to feel depressed about the whole thing. Don't know anybody else who has this. I hope this forum helps. It seems to be a place where everybody supports each other. So glad I found it. This is my first post. I feel for anyone else who is going through this. It's difficult finding out I have a disease that I'll have to live with the rest of my life...I keep telling myself it could be worse. That helps a little. I imagine I have started the grieving process that some of you have talked about. I hope everyone else who is going through this difficult beginning time will find this forum helpful.

Welcome to the board. It does get better with time. Ask any questions you need to and feel free to vent if needed.

[Peace41]

Hello Kayo,

Peace be with u. Can relate and know what u mean about the medical journey and system and what they didn't do and could have etc....and that is a journey of emotions and feelings thoughts that u will go through. For my family and I, when I became disabled and lost virutally everything in the process including my family, and my life became ruined along with my health, and it was caused by my peers being mobbed, even being in this group forum is a healing journey for me. U see it was group behaviour not any intolerance or sensitivites that I had to put up with that ruined my life, but also my son's life and forever changed my life and family. I lost my living skills in the process along with other things and people in my life, and I went through if only they would have told my real diagnosis, and not hidden it and dealt with work place bullying etc....and also give to me what I needed when I went through trauma, my ex specialist, meaning my ex psychiatrist, who I don't need to see anymore psychiatrists, would have admitted the truth and not cover it up, and given me the proper treatment there would have been a good chance of rcovery, and my son may not have been born with half of what he has been born with and I may have had a diagnosis of gluten intolerance sooner, or not at all, don't know if I have Celiac or Non Celiac GI. And when they fought with me every step of the way for the truth to be told, it took, them twenty years, to finally admit the truth, my goodness me, that felt amazing and yet still sad etc....and my life was robbed, no doubt about it, so was my family's life robbed. And now they (government) are finally taking responsibiltiy and we may get some compensation, but in the compensation process, what they offered me for pain and suffering, is dreadful. And no matter the amount of compensation nothing in this world could ever compensated for what I have been robbed of, but not just me others have been robbed of. Then they treated me like I was a throw away, no good but to sit at home and suffer in silence of which they could continue to bully. But Lord Jesus Christ took my ruined life and gave me His life and is restoring me. When they said I was not wanted He wants me, and I can help others because I have the time to do so along with some gifts and skills I have required. And I have just started an accounting course to do at home and I can do this for six hours a week. I am about to start ballet lessons at 49 for my healing journey, and learning keyboard, along with art and doing singing etc....and live in an amazing beautiful spot right now, that is very quiet and peeaceful, my life suddenly has meaning to it, it didn't have before.

But it is about moving on and making it the best thing that could have ever possibly happened to me. And it is about going through the healing process and honouring all ur moments. U know if u have a good support network is if they are there for u, in all ur moments. For me now I have been through a whole lot of stuff, and no longer want to blame. It happened and it needs to end and is coming to an end, so forgiveness can be brought for all, including the ones that have been negligent. And it is time for me to be released from frustration and Have Godly peace in my life and that is what the prize for me, is Godly perfect peace. And to be strong in that in my life, to be able to have that.

I have just gone through sadness with finding out about GI but I am seeing the blessings of having that diagnosis and the door open up for me, when before it was shut with regards to healing.

Hugs to u and all.

Peace41

Have a blessed day

I finally got diagnosed with celiac this past week. I have been gluten free since last summer and the Enterolab results came back with a positive for gluten intolerance (and soy) though previous blood work was negative. I also don't have the classic genes. Other than that I pretty much have a text book case according to my new (and fabulous) GI doc. Finally someone who understands, speaks my language, validates me and my symptoms. I'm relieved.

But I'm in a funk.

It finally sunk in that I have likely had this all my life and it makes me so SAD. I have RA and I practically live at the doctor's offices. I go in every few months for check ups and bloodwork. In nearly 40 years no one has ever tested me for celiac even though I had most of the symptoms and I have complained of GI issues and questioned Crohns, colitis, ulcers, etc only to be met with one road block after another. I live near a major city and go to an award winning hospital that has an autoimmune center and still... nada. This is when I get more MAD than sad.

I brought up celiac with my rheumy and he knew very little about it. I knew more than he did! What's the point of having an autoimmune center then??

Had someone tested me for this 5, 10, 15, 20 years ago I think about what my life could have been like. I'm generally not a 'what if' kind of person and I roll with the punches but this is a pretty damn big 'what if'. It could have meant less RA damage, less surgeries, less issues about my weight (I was an underweight/undernourished toothpick), less headaches, GI issues... etc. IBS is not an illness! It's a label lazy doctors slap on people so they can shove us with pills.

You get the idea. I know many of you have struggled with the same lack of diagnosis and treatment over the years as well. I'm thrilled to finally know what's going but I have myself to thank for that, not these award winning docs and hospitals. I went on a gluten-free diet on my own and got tested on my own. The validation of a diagnosis is great and I'm glad I have a good GI doc in my corner finally but I did all the work!

My questions > How do you deal with the sudden sadness and anger that comes up after having finally been diagnosed? Especially when you look back and think of the years lost due to poor health? And doubly especially when you have access to top medical centers and are pretty pro-active about managing your health?

[Welda Johnson]

Kayo,

Welcome to the site! Life will get easier now. I'm 65 and have Celiac symptoms since age 8 but, of course, no doctors ever came up with a diagnosis of Celiac. Just as with you, I had to do research and come to the conclusion myself what I could and couldn't eat. Then in 2000 a nurse read my chart, saw my list of food intolerances, and said, "Oh you have Celiac." I had heard that term before, but after that I got on this site and learned more, then really began being serious about the fact that I could only tolerate meats, fruits & vegetables. Sometimes I stick with fruits & vegetables only. I think when that anger arises, you might try getting in touch with your inner pain about the whole thing, because I heard yesterday that anger is unresolved pain. Flow with the sadness--those tears are ever so healing. This journey with Celiac eventually becomes an adventure, and it is so nice that we are all in this together. Best wishes to you! Welda