How Do You Mentally Cope With Celiac?

[mtdewpeg]

l

I have just recently been diagnosed with celiac. I have had intestinal issues for years and it wears on me. I went to several GIs and a colon Dr. for several years. I was always labeled with IBS. I had a couple EGDs done, but i GUESS NEVER TESTed for ciliac. In 2008 I had most of my colon removed. I had chronic constipation for many years. My DR DID A marker test, which is where you swollow little markers and after several days you get a xray to see how many were left. Almost all were there. He thought my colon needed removed, specially since all of the years I had seen specialist and nothing really helped. My colon was biopsied but no mention of any particular disease.

I was left with alot of diaharea. I did recently well for long periods, then I would get terrible runs and get wiped out. I would go on home IV fluids and get better. My Dr was a general surgeon who also deals with some intestinal disorders.

I had my left knee replaced in August of 2011. Every since then my health has really gone down. I had a small blood clot in my lung,malabsorption problems, iron deficiency anemia, weight loss, heart racing at times. I am having trouble getting my blood thinned to the right level because I am not absorbing the warafin well. the dose keeps getting upped.Now after reading the long term affects of not being treated for celiac really scares me.

Is there any hope for me ? I started the gluten free diet On Dec 28th of 2011. I had alot of blood drawn yesterday to see where I stand. He ordered CBC, metabolic profile, iron study, and many other things How does a person go through all of this and not think about it 24x7 ? I look at the celiac websites and it just makes me feel so depressed. This is not good on my family or friends.

[burdee]

l

I have just recently been diagnosed with celiac. I have had intestinal issues for years and it wears on me. I went to several GIs and a colon Dr. for several years. I was always labeled with IBS. I had a couple EGDs done, but i GUESS NEVER TESTed for ciliac. In 2008 I had most of my colon removed. I had chronic constipation for many years. My DR DID A marker test, which is where you swollow little markers and after several days you get a xray to see how many were left. Almost all were there. He thought my colon needed removed, specially since all of the years I had seen specialist and nothing really helped. My colon was biopsied but no mention of any particular disease.

I was left with alot of diaharea. I did recently well for long periods, then I would get terrible runs and get wiped out. I would go on home IV fluids and get better. My Dr was a general surgeon who also deals with some intestinal disorders.

I had my left knee replaced in August of 2011. Every since then my health has really gone down. I had a small blood clot in my lung,malabsorption problems, iron deficiency anemia, weight loss, heart racing at times. I am having trouble getting my blood thinned to the right level because I am not absorbing the warafin well. the dose keeps getting upped.Now after reading the long term affects of not being treated for celiac really scares me.

Is there any hope for me ? I started the gluten free diet On Dec 28th of 2011. I had alot of blood drawn yesterday to see where I stand. He ordered CBC, metabolic profile, iron study, and many other things How does a person go through all of this and not think about it 24x7 ? I look at the celiac websites and it just makes me feel so depressed. This is not good on my family or friends.

Wow! You've really been through the wringer! I know many celiacs (myself included) endured years of misdiagnoses, unnecessary surgeries, and doctors who either discounted their symptoms or gave them drugs to suppress symptoms without considering the cause of those symptoms. However, I've never heard of someone having their colon removed by a doctor who never even considered celiac disease. Then you continued to suffer problems which are related to gluten consumption. I'm so sorry all that happened to you. However, I think the gluten free diet can still help you resolve malabsoprtion, iron deficient anemia, and weight loss. You may be also suffering side effects from warafin.

I don't know how old you were when you were finally diagnosed with celiac disease, but I was 56. I spent the past 7+ years resolving other problems caused by long undiagnosed (and misdiagnosed) celiac disease. However, I now feel healthier than I have in years (healthier than I was during my 40s). Nevertheless, I suspect even the gluten-free diet won't undo the damage caused by removing your colon. You may stil get malabsorption and diarrhea. However, you may be able to resolve your other health problems caused by celiac disease.

I never really felt depressed by the challenge of the gluten free diet or even the years I spent being misdiagnosed (and even mistreated with drugs which caused more damage). I just felt very angry at all those stupid doctors who never considered celiac disease (and Hashimoto's thyroiditis, for which I had symptoms as long as I had celiac disease symptoms). I've tried to channel that anger into helping others with celiac disease and food allergies (I have 6 delayed reaction food allergies in addition to celiac disease). I led a celiac disease support group for a few years and next year I will start a group at my church for people with celiac disease and food allergies.

Keep posting here. Many others can relate to how you feel, even though they may have suffered different problems from undiagnosed celiac disease and/or misdiagnosed symptoms of celiac disease.

[Takala]

Is there any hope for you?

Yes.

Once you get used to eating differently, it's no big deal.

Keeping busy doing other things is the best coping mechanism.

[love2travel]

There is ALWAYS hope. Never think there is not. I understand what you are saying because I was there.

After my celiac diagnosis I was in shock and went through several stages: anger, sadness, grief...and it is very normal and natural. I gave myself permission to walk through each, no matter how long it took.

It took me a couple of months to feel better about it. Now, nine months later, it is completely second nature. I used to cry when I saw TV commercials about food - usually food I would not have eaten in the past, anyway - not any longer.

My mind used to be consumed with celiac but that way of thinking is over. Thankfully my home is totally gluten free so I feel safe cooking. It really helps if you are in a safe environment.

Perhaps to take your mind off things for a bit try doing something you love and it will help you focus on something else. I actually trained myself to do that and it seriously does help. A lot.

Give yourself all the time you need and you will eventually come to acceptance. Visualize your feeling so much better physically!

[beebs]

You know, after what you have been though, being gluten free would be a walk in the park compared!

[pondy]

For me, it just is what it is. Gotta accept life on life's terms I s'pose.

Actually, I like the fact that I am eating healthier now than I ever had.

[ravenwoodglass]

I am so sorry you have been through so much. You're not alone as many of us had to go through hell and back to finally get diagnosed. It does take some time to heal and some of us will go through a withdrawl when we first go on the diet. That can make us very moody and irritable. That will pass. It isn't unusual for us to go through a grieving process also. I think this is especially the case for those of us who suffered for so long and realize how much we lost because it took so long to be diagnosed. Sometimes a good therapist or your local pastor can be helpful. They are a safe place to vent your anger over all that you have been through and can provide helpful ways to cope. You may also have a celiac support group near you that you could visit. Of course you will also find a great deal of support here as this board has a fantastic group of people that understand well the frustrations and mixed feelings that come with being diagnosed.

Eat as much whole unprocessed food as you can. Take the precautions you need to take to prevent cross contamination at home and be patient with yourself. Read as much as you can here and ask any questions you need to. You will get through this. You have already been through so much and it likely seems overwhelming right now but hopefully soon you will be feeling much better.