Help

[judyg]

I need help from other Celiacs. I have been isolated in my disease surrounded by family and medical professionals who really don't understand Celiac Disease. I feel sad, helpless and feel like my life will never be the same. I am on medication for Bipolar, which hasn't helped and has been changed 5 times in 6 months. My body hurts daily. I have bad mood swings and depression and need to get back to normal because I have 3 children who need their mom back. I am tired of crying and feeling sorry for myself and I am looking for hope. I was a take charge person, I could handle everything and anything. The past 2 years I am lucky if I can even get up and get the kids off to school.

I have been Gluten Free since September 2009, other than a slip up during the holidays, which I am still paying for. I am looking for a support group or other Celiacs near Manteca, California, who want to get better together and learn ways to have a life even with Celiac Disease.

[bethfuller]

Judy-I just got on here because of how frustrated I have been as well. I think both of us need to find a group and join-me, I've never been good at asking for help but I think I am going to need to seek out some helpful people. I just got diagnosed a few weeks ago and haven't had any relief...only a day here and there when I haven't had uncontrollable bowels (that's my fun symptom-and I teach 6th graders-more fun). I have been vigilant about the gluten-free but also found out I am allergic to eggs and peanuts. I now I am thinking I am lactose intolerant too. I just wanted to tell you that I feel you. My mood swings and depression are tough, my husband has been supportive but is also getting frustrated. He wants his healthy wife back (and my three kids). I keep hearing that people are feeling better right away.....that's just not the case here. I too am trying to keep my head up- I just feel that everything is poisoning me. I've never ever been a hypochondriac, I rarely go to the doctor unless for a physical or OB. So this is a complete mind change for me.

Definitely go to that group-I will look for one here in VA.

~Beth

[RiceGuy]

You're not alone in how you feel. But I can tell you that no matter how bad it all might seem, it will get better. Not just because you learn to "deal with it", but because your health will improve as long as you remain gluten-free, and that will have a tremendously beneficial impact on your health and sense of wellbeing.

Keep in mind that research has shown that gluten has an opioid effect on the brain. This means it has some of the same effects as heroine. Gluten is addicting, and many go through a period of withdrawal when they first go gluten-free. A number of neurological problems have been linked to Celiac Disease/gluten intolerance. So, considering all these things in combination, what you are going through is much more understandable.

Also, there are nutrients which play a vital role in neurological health. Anxiety, depression, bipolar, and even schizophrenia have all been linked to nutrient deficiencies. If nothing else, get yourself a decent co-enzyme B-complex, a separate sublingual methylcobalamin B12 tablet (5mg per day), magnesium, and vitamin D3.

Here's a thread which you may also find helpful:

https://www.celiac.com/gluten-free/index.php?showtopic=65445

[isitreally]

Judy and Beth -

I agree with RiceGuy...vitamins and minerals are very important. When I was diagnosed my MD also ran a complete nutrition panel - I was seriously deficient in B vitamins, D, Magnesium and Folate - borderline anemic (which I had always been)...so she felt that there was no doubt about the problem.

I was told I was depressed for years and reluctantly took meds - I have only been strictly gluten free for a few weeks but mostly gluten free and religiously took my supplements for over a year. I was able to stop taking the meds (under doctor supervision) almost immediately (I would not recommend that to anyone, there were special circumstances involved) - and NEVER have an issue unless I have gluten! It's truly amazing how involved these vitamins are in your emotional/mental health.

I also agree that you are NOT alone! I put off going strictly gluten free for over a year because I didn't want to be "different", or "put people out" or be "difficult"....then my hands started going numb, and my daughter started having issues. I got a very stern talking to by my doc that I was in big trouble and this could possibly be nerve damage!

This is a commitment and a huge life change (and some days completely overwhelming), but it will be worth it. My withdrawel symptoms (even with very little gluten) have been horrible, way worse than any symptoms I had with gluten - but I keep telling myself I am grateful that my issue can be healed with food and diligence.

I hate pre-planning everything, I hate packing "emergency snacks", I get nervous going out with people, but each time I do these things it gets easier and it's definitely worth it. Last week I had to make pizza crust, cupcakes twice, and pack an "emergency" school snack box for my daughter (2 birthdays and a general proactive measure) - what a pain! But again, she was so happy to be like "other kids" and I was so happy her body was safe, it was all worth it. I also noticed this week that it took less time to do the grocery shopping and I'm getting the hang of making meals.

Please make the effort to go out and meet others with this issue, post questions here, and take a stand for your health. Consider journaling, even just jotting down a few notes about what you ate and how your symptoms were each day. This has helped me see that although my symptoms are still pretty bad, some are changing and some are getting better.

I hope this helps and it doesn't sound negative. I just thought it might be helpful to hear someone else's honest frustrations and how they are becoming less so. You are definitely NOT alone!

[judyg]

Thanks for all the input. I am definitely going to get some vitamins, I just need to make sure they are Gluten Free as well. It is definitely hard because I get dizzy and confused when I start looking at all the ingredients. My husband is finally starting to understand a little better too which is a big help. I just feel real fragile emotionally and physically right now and get frustarted very easily when I can't do the things I used to. I can't even go for a walk without being exhausted and sore and I want to go back to work and don't know when that will ever happen. I guess I should look at it differently and more positively and think of it as just one more obstacle in life to overcome. Let's hope that works.

[GFinDC]

Hey Judy,

You are pretty new to gluten free. It can take some time to learn how to eat again, and to take care of yourself. Many people find a simple whole foods diet the best way to start. Bascic foods that you cook from scratch are good. Avoiding processed foods can help to eliminate hidden gluten ingredients and also lots of preservatives, food colorings, and mind control drugs (ok, I am kidding on that last one). Something to keep in mind is that quite a few of use have developed other food intolerances along with the gluten. For me soy was having a big impact until I completely eliminated it. So, if you don't feel better after a while on a simple whole foods diet, you would want to consider other foods to eliminate.

The CSA (Celiac Sprue Association) has chapters around the country. That might be a good place to look for a local support group. I think I saw an estimate of 1 million celiacs in the USA somewhere. Lots more around the world too. So you are not alone. You can tell by all the gluten free items appearing in stores these days that celiac disease is not so rare anymore.

Don't forget to check all you meds as well as the vitamin pills etc for gluten too. Welcome to the club celiac! :-)

[Korwyn]

Thanks for all the input. I am definitely going to get some vitamins, I just need to make sure they are Gluten Free as well. It is definitely hard because I get dizzy and confused when I start looking at all the ingredients. My husband is finally starting to understand a little better too which is a big help. I just feel real fragile emotionally and physically right now and get frustarted very easily when I can't do the things I used to. I can't even go for a walk without being exhausted and sore and I want to go back to work and don't know when that will ever happen. I guess I should look at it differently and more positively and think of it as just one more obstacle in life to overcome. Let's hope that works.

Hi Judy,

Vitamineshoppe and kirkmanlabs both have a large supply of gluten-free,Casein/Dairy free, and other allergen free vitamins. Vitaminshoppe is also very good about responding to inquires on specific items and their QA dept has called me directly a couple of times to answer questions I've had.

Also two books that might be helpful for your you and your husband are 'Living Gluten Free for Dummies' (it was a lifesaver for us) and 'Celiac Disease, the First Year'.

And as someone else posted, find a support group. the CSA and National Gluten Intolerance Group (gluten.net) both have affilated support groups all over the country. Finding a local GiG group has been mentally and emotionally a God-send for my wife and I.

As far as the soreness part, it might help you to completely cut out tomatoes and eggplant (if you eat any) from your diet for a while. Nightshades (tomatoes, chili peppers, eggplant, potatoes are part of this family) are known inflammatory agents and may be aggravating your soreness and pain right now.