Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help

judyg

By judyg
in Coping with Celiac Disease

Recommended Posts

judyg Newbie
judyg
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bethfuller Newbie
bethfuller
Posted

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 Collaborator
RiceGuy
Posted

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 Newbie
isitreally
Posted

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 Newbie
judyg
Posted
  • Author

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 Veteran
GFinDC
Posted

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 Explorer
Korwyn
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.