How Do You Deal With Being Angry?

[lisa922]

I am feeling soooo angry and grumpy right now and I just don't know what to do. People I know just don't understand what having Celiac is like. Thank God for the message boards as a way to connect with other Celiacs! Of course the diet is incredibly challenging, but if that were the only obstacle, I think I could handle things better. It is the extra damage this has done to my body that is driving me crazy. I've had this weird abdominal "swelling" that has been here since exploding in my body in Feb 2003 and no doctor has been able to explain it. It gets in the way of activity and while now it is mostly uncomfortable, it can also be painful. I had an ERCP with sphincterotomy in April to clear out my common bile duct, and that did give me some relief. But, my cortisol level is low, and I have very low blood pressure and I get pains in my back near my kidneys so I'm concerned about Addison's. And my bilirubin is going up instead of down, and I wouldn't be too worried about that because I have heard Celiac can elevate the levels and they often normalize after being gluten-free, but I also have right-sided rib cage pain. I get chest tightness and pains and have no idea what that is all about. I've had surgeons tell me to see gastro doctors and gastro doctors tell me to see surgeons. My insulin level is as low as a Type 1 diabetic, but my blood sugar isn't high all the time, so that is another mystery. I'm just so darned angry that this wasn't discovered a long time ago so I wouldn't have to deal with all these extra diseases. Now my children have been consuming gluten for 10 1/2 and 6 years and who knows what damage is going on in there (they'll be tested soon). I'm just finding I want to rant and rave and be mean and I don't know how to stop acting like a big old baby. I saw part of the St. Jude's special that was on yesterday and there were all these young kids dealing with illnesses far more critical than mine, yet they seemed to be able to handle it better. If someone has any advice on how to help me deal with this without being so bitter, I'd love to hear it. Thanks for letting me vent!!!

LISA

[tarnalberry]

Part of not being angry is mourning the loss of what you think you should have. Some people find this mourning process easier than others, but it's still a process. (And a cyclic one at that - you may feel this way again years from now, after thinking you had "dealt with it".)

We're "taught" that we should have the right to have all this stuff, that we have doctors who should keep us perfectly healthy, that we deserve things to be just right unless WE do something to make them wrong. Unfortunately, that isn't really true. Sometimes we do everything we think is right, and things go wrong. Sometimes other people do everything they think is right (like doctors), and things go wrong. Then we feel as though we were denied something that should have been ours, even though it wasn't really a right in the first place. But it's still felt as a loss, and it hurts, and can make you angry.

I compare it to the loss of a loved one. From my own experiences with my mother's and grandmother's death (and my extreme falling out with my father), I understand and sympathize with the anger of losing a loved one. And from my experience with dealing with going gluten-free, sometimes there are similarities. (I'm not trying to trivialize either one here, just drawing a comparison of similar elements.) I can say both "it's not fair that I didn't get to have a mother growing up" and "it's not fair that I can't eat what 99% of the rest of the world can eat". But really, those statements are based on the assumption that everyone is entitled to what everyone else has. We get used to that idea, that we all have it nearly the same. And then when it's highlighted that we don't, it hurts, because our idealistic dream has be smashed.

With some mental effort, you'll get past being angry and a big meanie about it. But don't feel too guilty about being angry and grumpy about it until you do get there, because it's part of the process of mourning your loss. Keep up the work with your doctors - and remember that you have started to find out what's wrong, instead of it taking another 5, 10, 15 years...

(You know, this reminds me of my yoga teacher's closing words after some of the final meditation in class... something about "that which is your birthright, perfect health". The first few times I heard that, it kinda pissed me off - like "uh-huh... maybe for YOU", but then I realized that it was a metaphor, and one not restricted to physical health.)

[lisa922]

Tiffany -

Thank you very much for your response! It is so well-worded and makes a lot of sense. You are very smart to have been able to figure these feelings out. I'm sure I will re-read it many times until all this sinks in. Thanks, again

LISA

[tarnalberry]

thanks. send some of that appreciation towards my therapist... she's helped too. :-)

[plantime]

"I had an ERCP with sphincterotomy in April to clear out my common bile duct, and that did give me some relief. But, my cortisol level is low, and I have very low blood pressure and I get pains in my back near my kidneys so I'm concerned about Addison's. And my bilirubin is going up instead of down, and I wouldn't be too worried about that because I have heard Celiac can elevate the levels and they often normalize after being gluten-free, but I also have right-sided rib cage pain. I get chest tightness and pains and have no idea what that is all about. I've had surgeons tell me to see gastro doctors and gastro doctors tell me to see surgeons. My insulin level is as low as a Type 1 diabetic, but my blood sugar isn't high all the time, so that is another mystery"

Has your doctor done a liver enzymes blood test recently? These are some of the symptoms that I have that are associated with my liver being damaged and inflamed. ESPECIALLY THE RIGHT-SIDED RIB CAGE PAIN!! Liver problems will interfere in the workings of the gallbladder (bile ducts) and the pancreas (blood sugar levels). Chest tightness and pains could be from pressure that a swollen liver puts on the diaphram. It is worth a visit to a regular doctor to have it checked. I have a damaged liver now from using Lipitor for high cholesterol. Now that I know what caused the problems, I know what to do to let my liver heal itself. Right now I feel miserable, but in 4-6 weeks, if all goes well, I will feel fantastic again.

[lisa922]

I have been wondering about my liver, too. My PCP did a Liver Function Test and it showed my bilirubin was elevated a little and one of the other ones isn't high yet, but it is like 3 points away from being high. The gastro doctor on Thursday wanted to follow-up on it, so he did another LFT - this time with both the direct and indirect (the other one was bilirubin only) and he also did something called GGT. Thanks for the suggestion and letting me know how similar your symptoms were...I will make sure that the doctor keeps up with this. I just hate that I don't go back until August! Do you mind if I ask what you have to do to get your liver back in good shape?

LISA

[plantime]

Lisa, You are going to love the irony of what I have to do for my liver: 75% of the food I eat each day MUST be raw veggies and fresh fruit, protein MUST be derived from beans, a cup of dandelion root tea each day (but NOT if you have gallstones!), lots of water, and lots of rest. It seems an enlarged or inflamed liver is best treated by (I love this part!) WHAT I EAT!! After going gluten-free for celiac, I had no trouble adjusting to this one. This diet is only until the liver is healed, so it is not for life.

[tammy]

Hi,

I can relate to your feelings and the words shared by tarnalberry really seemed to bring the emotions from the gluten-free lifestyle all together.

It was also true for me, the anger and the basis for a lot of my feelings. I had a long grieving process coupled with poor health in my early teen years. It was a culmination of all the hope to find a cure and the disappointment of never realizing true health. I think that once you see the benefits of addressing your current situation, soon you will be on your way to optimizing your health for the future of yourself and your family.

I had a doctor tell me that he suspected that I too had Addison's. But he was wrong, I am adrenal insufficient. There is an important difference. I am also hypoglycemic. The main root of my hypoglycemic symptoms is from my adrenals. May I recommend a great book written by a doctor and a certified nutritional counselor, the book's title, "Prescription for Nutritional Healing."

I want to hear how you are coming along in your gluten-free walk.

[Guest cd&dhspruehead]

I'm angery at my aunt.She just tald me not to long ago that her husben has a wheat allergy.NOT CELIAC but a wheat allergy.We fought over this,but she is the idot.She also has a cusen on his side who also his a ''wheat allergy''.''I'ts not celiac''.My uncle was told when doctor still belived that childern would grow out of wheat allergies.So he is eating bread,cakes,cookies,pies,every thing he isn't aloud.If my aunt would do her homework she would know it was celiac.she also gets on my mother and I about how we found out.her cusen however knows what it is and gets the things she needs off the computer to eat.this same aunt coused my mom and I not be invited to a wedding couse ''it my hurt our feelings not eating what thay put out on the table''.it's stupedity on her part.but shes the one how will loose in the long run.

[dana-g]

Dessa, THANK YOU for you posts! I am awaiting the results of my liver enzyme tests, and my right ribcage is really giving me trouble. I, too, had been on meds in the past that could affect the liver, and the last (pre-celiac disease) test showed a very high level. The doctor thought the result was disproportionately high for the low dose of medication I was on. I did go off the drug, then all this celiac disease stuff happened and I didn't think about it again until my side started to hurt and I just happened to see something on this board about liver enzymes...life is full of coicidences, although I like to think of them as blessings! It got me back to the lab for another test, and here I sit, waiting to find out what shape my liver is in. I feel so much better after hearing of the treatment you are undergoing. I was afraid prednisone was the way to go...not my drug of choice.

As far as feeling angry and resentful about celiac disease and its lovely host of secondary diseases...for me, the first step is acceptance. The "Serenity Prayer" helps a lot there. I think it's also important to give ourselves time to grieve...it's okay that I want to wrestle that chocolate licorice out of my sister's hand! I just help myself to a gluten-free chocolate chip cookie and keep going. I do get frustrated sometimes, like at Costco, where they give away yummy gluten-filled food samples, and I feel sorry for myself and want to cry. So I make sure I've eaten before I go, and have a yummy dessert of my own waiting at home for when I'm done shopping. It's plan, plan, plan, all the time, kind of like having a newborn again, every day of your life...but my reward is, aside from my current liver problems, the best health I have ever experienced in my life--no more cancelling plans with my kids because my gut was acting up, or I had a headache, or I was throwing up, or bloating up, or just plain feeling wrung out. And the biggest blessing of all is that my 11-year old daughter was dx'd, and she won't have to be a sick old hag like me, complaining on the internet about all her secondary illnesses from having had undiagnosed celiac disease for 46 years...plus one thing I've learned is, no matter how bad things seem, they can always be worse. So I figure I'll take what I've got!

[plantime]

Dana, One thing I have really learned from this board is that my health is in my hands. I am responsible for taking care of myself as much as I can. I have been researching nutritional health, and have learned that celiac is not the only thing that can be treated just by what I eat. I can lower my chances of diabetes, Alzheimer's, heart disease, cancer, arthritis, blood clots, anemia, asthma, and allergic reactions, just to name a few! All I have to do is make sure I eat nutritious food and get good exercise and rest. I am not taking any more meds for cholesterol or to heal my liver. I will use what I eat to take care of myself.

[dana-g]

Thank you so much for your encouragement. I can't tell you how much better I feel knowing that I'm not alone, and that there is a "kinder, gentler" way to heal myself!

[lisa922]

Thank you everyone!! I agree with Dana that it makes me feel so much better, too, knowing that I'm not alone and it helps so much to get advice from people who have been there before!

Dana - How long after you were diagnosed did you find out your daughter is Celiac? Is she full-blown Celiac and does she have any additional problems? I am in the process of working things out to get my 2 girls tested. I need to get in touch with the pediatrician again - when I first called just after I was diagnosed, he said they didn't need to be tested, but I have gathered enough proof that they do, so he better authorize the bloodwork!!

Tammy - glad to hear you only have an adrenal insufficiency instead of full blown Addison's - hopefully that will be true for me, too! And thanks for the advice on the book - I think I can open a small library now because I keep buying so many books on every illness!!!

Dessa - I am amazed that diet affects your liver so much!! Wow! That is exciting to think just what you eat can heal it - of course, I suppose the opposite is true, too, so I guess it is particularly important to eat well!!! I have noticed when I eat gluten-free carbs, I feel worse then when I eat the fresh veggies and fruits. Let me know if you have any good ways to make beans...I pretty much just eat the Bush's vegetarian ones and I have another type of refried ones, but I'd like to try more!

Tiffany - I cut and pasted your reply and sent it to my friend because I liked it so much. She thought it was great, too, and forwarded it to her boyfriend. He is going through testing and his doctor wants him to have his tonsils out to see if he has Lyme disease because all his other tests for it keep coming back negative. He has been told he has a wheat sensitivity, but has decided to pursue further Celiac testing before the surgery, just in case that is really what's going on. Needless to say, he's a little "angry" also, so your words of advice are traveling around helping others!!!

celiac disease&dhspruehead - sorry to hear about your aunt's attitude - that must be very frustrating!!

[tarnalberry]

awww.... thanks. :-)

it certainly does help to know that you're not alone!

[dana-g]

Lisa--celiac disease is a genetic disease, and your children MUST be blood-tested. Your doctor's response is inexcusable. As soon as I was diagnosed, I phoned my kid's pediatrician, set up the appointment, and got the tests--both of them had results that warrented biopsies, and they both had them. Only my daughter has celiac disease. If I had followed YOUR doctor's advice, she could have ended up with any number of the awful secondary diseases untreated CDs get, like diabetes, or even lymphoma...sorry if I sound harsh, but your doctor isn't with the program, and it could have disasterous results for your children. FYI, in Italy, they test EVERY child at age six for celiac disease...none of this ignorant nonsense that goes on in the US.

[dana-g]

By the way, the only symptom my daughter had was occasional cracks in the corners of her mouth--NO intestinal symptoms at all. Lisa, please call a pediatric gastrointestinal specialist if you have to in order to get the back up you need to get these tests!

[angel-jd1]

FYI, in Italy, they test EVERY child at age six for celiac disease...none of this ignorant nonsense that goes on in the US.

All I have to say is AMEN!!! I sure wish they would do that here in the U.S. then we wouldn't see people suffering for 10,20,30, and 40 years with pain!! I remember reading that fact when I was first diagnosed and being astonished, hard to believe one country can be so ontop of it, and another has no clue what the disease is about!!

-Jessica

[lisa922]

Dana - I agree with you - I thought it was crazy that he said not to test them. I knew I would go back and ask, but I am glad I was able to gather some info first. I really am convinced that my brother's kids may not have been tested with complete work-up (he hasn't gotten copies of their stuff, just was told they were negative). I feel like mine will be getting the complete work-up and we won't have any false negatives. I meant to drop off the info for the doctor yesterday and forgot to bring it with me, so I think now that I'm thinking about it, I will print it and fax it! I'll let you know what happens. I think it is great that in Italy they automatically screen for it. I look at my youngest and see various gastro symptoms, but then I look at my oldest, and even though I don't see any gastro stuff, she had Kawasaki disease when she was just under 2 and she has keloids on her ears after her piercings got infected and would absolutely not clear up (this was even after she had had them pierced for 4 months and they had been fine). I know that Kawasaki is thought to have an autoimmune component to it, and I just thought about the other recently and was thinking I should look that up, too.

I just saw your other message - my older had the cracks in her mouth when she had the Kawasaki, and so did I!! I still maintain I had it also and they just missed it with me because they claim adults don't get it. I did call a Pediatric Gastro for back-up and mentioned his name in the letter to the Pediatrician, so one way or another they WILL be tested and I want it done soon so I can get them gluten-free. I cringe when they eat bread now!! Going to go print my letter!! Thanks for the back-up!!

LISA

[lisa922]

Ok, everyone...what do I do now....I have read a lot about the blood tests and seen the recommendations by Prometheus Labs and Danna Korn's site that suggest having like 5 things done (IgA, IgG, tTg, EMA, and Total Serum IgA) and the HLADQ2 and HLADQ8 genetic tests. I faxed a letter to the pediatrician along with copies of the info from the websites. He is clearly willing to work with me, but I just don't know where to go from here. He said I could send them to the pediatric gastro doctor in Winston, but I kind of didn't want to jump the gun and do that right away, especially if they don't even have it. I know he doesn't feel like the girls have much in the way of symptoms, so I think he is surprised I want to test them, but I explained that I never had severe gastro symptoms (until 2003). I suppose in hindsight, I did have some gastro issues, but I never thought they warranted seeing a doctor about them. I've had more in the way of autoimmune stuff and I don't want them to get those problems. He asked me if they tested positive but don't have any gastro symptoms, would I still have them go gluten-free. I said, of course because of the other autoimmune diseases. I really think he is looking at it only from a gastro standpoint. He did call the gastro doctor who is an expert on Celiac, and the gastro doctor suggested only doing the IgA and tTg tests (even though his nurse told me about the genetic). So...what do I do...do I just get those two? I was negative on my tTg and only weakly positive on the IgA. I'm worried about a false negative, and feel like I'll be a worry-wart if I don't get the genetic stuff as well. The gastro dr strongly believes in the biopsy, too, if positive, but I didn't know if I wanted to do that with the kids. I could just go see the gastro dr first, but I'm anxious now to get the tests (It's been 7 weeks since I found out about me and so it hasn't been that long, but I'm afraid if I wait to see the gastro dr first, they won't get them in for another few months). Do I just start with those 2 tests and forget about the rest, or push for all of it and do I just use the lab here, or go for the gold and use Prometheus and have it mailed there? Can't wait to hear your suggestions!!! I know ultimately I have to decide, but I like hearing from those who have been there and done that. Thanks!!

LISA

[kalo]

Do you know about enterolab? It is a non invasive stool test that is much more reliable than the blood test. Kind of expensive but worth it. Hugs, Carol B (who's waiting for her results from them)

[lisa922]

Carol - Yes, I have heard of Enterolab, but I was hoping to have this covered through insurance and I figured the doctors would question the Enterolab results, so I'm using their methods for now. Thanks, anyway!!

LISA

[lisa922]

Just wanted to let everyone know that I went ahead and ordered the kits from Prometheus Labs. I feel like I'll have regrets if I don't do the full panel of serology - especially since my tTG (and my Dad's) were both negative and I know the partial test my doctor was talking about relies heavily on tTG. I called both the hospital and a local lab and both said they would be willing to draw the blood (for a fee) and would then ship the samples to Prometheus. I am a little nervous about feeling like I'll need to stand over them to make sure the shipping is done correctly and am not sure yet how I will handle that, but I'll figure that out when I get the kits tomorrow and can read all the info in them. I think the pediatrician was surprised at a lot of the info I gave him. At one point, he asked if I'd still make them gluten-free with positive bloodwork if they didn't have any gastro symptoms and I said, OF COURSE!!! The doctor's need to get a new definition of Celiac so they'll stop thinking gastro symptoms are the only concern. I'll post in a few weeks when I find out their results. Thanks, again

LISA