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

New Girl - Trying To Work Out The Ropes!


snowcoveredheart

Recommended Posts

snowcoveredheart Apprentice

hi all,

brand new to the forums so please be gentle.

I was diagnosed with celiac disease some 7 years ago... at the same time i was told i was lactose intollerent (it also attack the system) - however due to many other issues least of all the fact i was going through mental health diagnosis (im Bi polar) i couldnt have cared less... needless to say that i ignored it all.

I am now fully diagnosed and have been coping with my BP for about a year (and am finally gaining some success with it - not on meds, i cannot afford the side effects and do what i do at work).. as such i have turned my attentions back to the gluten-free and DF diets... after all there is much evidence that what we eat affects the mood and mental health.

I have read all the gumf i was given and everythign else i can get my hands on and am going for a total absinence from all sorts of stuff ive had a reaction to ( i also had a reaction to peanuts and soya and dairy on the tests) and then try and put some of it back in if i can.

my main concern is how this will affect my weekends as so much of what we all do socially is focused around food! but seeing so many peeps living well with it does give me blessings all

S

xXx


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

Hi S: Welcome to the Board!

We never eat out anymore due to my husband's Celiac; but we've learned that the sacrfice is worth it as most of his symptoms have gone away, but the permanent damage is still there.

Whether to eat out or not is entirely up to you and your level of confidence with the restaurant AND server.

Just a suggestion: I would recommend going to celiac disease support group meetings and try to cultivate some friendships from others who share your health concerns. We don't have a support group around us and I can tell you that had we, it would have been easier for us.

chocolatelover Contributor

Hi S! Welcome!

I hope that you feel welcome here--the vast majority of the people here are knowledgeable and supportive and happy to share their experiences and information. It's really a great group. I am new to this and I can honestly tell you that had it not been for this site, I don't know what I would have done! I received NO information from my doctor's office, so everything I have learned I have gotten from these people and doing research online.

I am very wary now of eating out. I haven't been out since I was dx'd and probably won't eat out until the end the month when we have company here. I have been gathering a list of restaurants that provide gluten free menus, and I know that I can pretty much always get a salad with oil and vinegar if nothing else. I am also intolerant to casein, so that complicates things just a bit. I also know people who take their own food when they go out just to be able to socialize with their friends. I have definitely been known to bring my own salad dressing. I guess it's all what you are comfortable with. I also know a lot of people who do a lot of entertaining in their home, that way they can control the food that is prepared and eaten.

So, come often, lurk, post, share, complain, ask questions--this is a great place to get info and support!

Good luck with your bp--I have a relative who is also bp and would love for him to get off his meds as well. Keep me posted on how it's going!

CL

NoGluGirl Contributor
hi all,

brand new to the forums so please be gentle.

I was diagnosed with celiac disease some 7 years ago... at the same time i was told i was lactose intollerent (it also attack the system) - however due to many other issues least of all the fact i was going through mental health diagnosis (im Bi polar) i couldnt have cared less... needless to say that i ignored it all.

I am now fully diagnosed and have been coping with my BP for about a year (and am finally gaining some success with it - not on meds, i cannot afford the side effects and do what i do at work).. as such i have turned my attentions back to the gluten-free and DF diets... after all there is much evidence that what we eat affects the mood and mental health.

I have read all the gumf i was given and everythign else i can get my hands on and am going for a total absinence from all sorts of stuff ive had a reaction to ( i also had a reaction to peanuts and soya and dairy on the tests) and then try and put some of it back in if i can.

my main concern is how this will affect my weekends as so much of what we all do socially is focused around food! but seeing so many peeps living well with it does give me blessings all

S

xXx

Dear snowcoveredheart,

Have you been on a lot of antibiotics, birth control, or steroids for asthma or other things? The reason I am asking is because I have done a lot of research on a systemic overgrowth of Candida yeast. In my research, it has been implicated as a cause of Bipolar Disorder. It has links to other diseases such as schizophrenia, autism, ADD, ADHD, and Alzheimer's. Yeast can cause so many physical and mental problems, it is unbelievable.

Sincerely,

NoGluGirl

snowcoveredheart Apprentice
Dear snowcoveredheart,

Have you been on a lot of antibiotics, birth control, or steroids for asthma or other things? The reason I am asking is because I have done a lot of research on a systemic overgrowth of Candida yeast. In my research, it has been implicated as a cause of Bipolar Disorder. It has links to other diseases such as schizophrenia, autism, ADD, ADHD, and Alzheimer's. Yeast can cause so many physical and mental problems, it is unbelievable.

Sincerely,

NoGluGirl

Hi NoGluGirl

There are some wonderfully informative governmental reports out there now regarding what we eat and the effects it has. I have obviously done a hell of a lot or research myself over the years (it took seven years to get my final diagnosis and the issues had arrisen long before that point). Equally there are far more interesting reports as to the causes of bi polar, most of which agree there is no single answer and a lot of darkness and guess work.

As to your question, no i have not. I have been on birth controll for nearly ten years now (on and off) however, due to hormonal issues im on a much lower level dose than is standard and ive never taken steriods or had asthesma.

I am interested to see how the new diet aids, I have been warened than initally i will be in for a rocky patch whilst my body gets used to the changes (as would everyone) but of course given the gravity and biological nature of those changes and adjustments there is much to look out for as they affect other aspects. Hopefully, when i get to the other side of that it should be worth it.

kbtoyssni Contributor

Your weekends will be so much better if you're not sick all the time! When everyone's eating at a friend's place, I bring my own food. I also have one friend who is amazing about my diet so he cooks for me (he's the only one I'll trust to cook me food). If we're going out to eat, sometimes I still bring my own food. If I'm going, my friends will make sure it's a gluten-free-friendly place - I have a ton of influence on where we eat. Sometimes I meet up with everyone after dinner. I also do a lot of activities where you can get food, but don't have to. If I'm going to the movies or sporting events I eat before I go and don't buy any food there. I'm also the one who always has a pocket full of food (fun size bags of M&Ms, fruit snacks, an apple). I went out to a fancy dinner the other day with a tiny purse that you can only fit the essentials in. Everyone laughed to see that my essentials are money, cell phone, lipstick and M&Ms! M&Ms wouldn't be in anyone else's essentials, but they are of vital importance to me :)

NoGluGirl Contributor
Hi NoGluGirl

There are some wonderfully informative governmental reports out there now regarding what we eat and the effects it has. I have obviously done a hell of a lot or research myself over the years (it took seven years to get my final diagnosis and the issues had arrisen long before that point). Equally there are far more interesting reports as to the causes of bi polar, most of which agree there is no single answer and a lot of darkness and guess work.

As to your question, no i have not. I have been on birth controll for nearly ten years now (on and off) however, due to hormonal issues im on a much lower level dose than is standard and ive never taken steriods or had asthesma.

I am interested to see how the new diet aids, I have been warened than initally i will be in for a rocky patch whilst my body gets used to the changes (as would everyone) but of course given the gravity and biological nature of those changes and adjustments there is much to look out for as they affect other aspects. Hopefully, when i get to the other side of that it should be worth it.

Dear snowcoveredheart,

Hopefully, the gluten free diet will correct this. Many people with Celiac or gluten intolerance have mental health issues as well. For me, it is depression. It is nearly impossible to be happy when you are constantly physically suffering. I too, have hormonal issues and was put on the Depo-Provera shot. Ovarian Cysts were my trouble. I had five in less than 10 months.

The research I have done on Bipolar disorder was interesting. I read that it is actually an excessive amount of serotonin, instead of the lack of it present in people with depression and anxiety.

I am curious about nutritional deficiencies concerning it. There are a number of celebrities that have Bipolar Disorder. English actor Jeremy Brett (Sherlock Holmes Mysteries), Linda Hamilton (Terminator), and soap actor Maurice Benard (Sonny Corinthos on General Hospital) all have it.

Sincerely,

NoGluGirl


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Hi S,

Just wanted to welcome you to the board! I hope that you find this place a warm and supportive forum, full of education and tips for the gluten free life!

I'm happy that seeing others has given you hope. Its very hard when you don't know anyone else who has it---so seeing others who live "normal" lives makes us feel more empowered---"Hey, if they can do it, then I can!" We all started with ZERO knowledge, so its certainly possible.

We still go out, but a lot of times I'll either eat beforehand or bring food with me. Esp in the beginning, instead of going out, we had people over to the house (and still do). I have certain friends who have learned to successfully cook for me. Eating out can be tricky, but it helps to establish a relationship with a restaurant and they'll get to know you. With eating out (and, eating in!) its important to remember two things: 1. ingredients and 2. cross contamination/how its prepared.

It might be helpful to keep a food journal, and track your symptoms as well.

Let us know what we can do to help!

Laura

redwolfgirl Newbie

Hello Snow,

I have Bipolar II and have been off meds for nearly eight months (and so happy to be). I was doing okay but my mood seemed to change for the worse as my digestive problems increased. I was much more depressed than usual, which comes with the territory for me. I stopped eating gluten about a week ago and I really do think my mood has changed for the better. I have had BP for almost all my life so I find it hard to believe that eliminating gluten would change that but one never knows. I am hopeful.

Good luck!

RedWolfGirl

snowcoveredheart Apprentice
I read that it is actually an excessive amount of serotonin, instead of the lack of it present in people with depression and anxiety.

I am curious about nutritional deficiencies concerning it.

hi,

it is that case when in manic phases - of which there is hyper and hypo. I am thankfull that ive only had one large period of hypo manic to date, which is what took me to the hospital in the first place! i dont know if deficiencies really cause or relate to BP, mush of the research is still guess work, but i am hopeful that a diet that suits me and contains fish and other benefical food sources and hopefully regulating my suagr levels will help.

S

xXx

Guhlia Rising Star

I don't know if this relates at all, but I was diagnosed with Borderline Personality Disorder after years of being misdiagnosed as bipolar. My symptoms have all but vanished after being gluten free. They first started to noticeably wan after about a year gluten free, after three years gluten free I think shrinks would likely tell me I'm pretty normal. I feel healthy for the first time in my life, both emotionally and physically.

I was told by my doctors that BPD was something that I would never be able to outgrow and there was absolutely no treatment other than intense therapy. I am living proof that one can overcome the "unconquerable" mental illnesses and I did it WITHOUT intensive therapy. All I did was go gluten free.

When I get glutened I display mild symptoms of BPD. I tend to get a little paranoid, angry, and manipulative, but I have never fallen back into things fully. Hopefully the same thing will be true for you with your BP.

NoGluGirl Contributor

Dear Snowcoveredheart,

I am glad to hear you have not had too many nasty episodes. The manic phases are difficult from what I hear. My Great Uncle was bipolar. My Aunt worried constantly about him. She never knew if he would be okay. I am sorry to say, those medications can actually do more harm than good. They changed his dose, and he committed suicide. :( My Aunt was devastated. Doctors should supervise people with this condition more carefully when they adjust medication. It made me angry the doctors were not more careful.

You mentioned your blood sugar is a problem. I am hypoglycemic, and I get mean if my blood sugar gets low or I get too hungry. It also makes me sick. I have to eat small frequenty meals in order to keep my sugar levels up. Really, one of the best things to balance blood glucose is the Zone Diet. Each meal is 30 percent fat, 30 percent protein, and 40 percent carbs. It is also easy for Celiacs to do. They discourage grains being eating often. It also helps your concentration and everything else. This eating plan seems to be the smartest out there, because it is about balance.

The only thing that was said to be mentally wrong with me was being hyper, which is difficult to deal with at times! My brain seems to be in DUH MODE a lot lately.

Dear Guhlia,

I believe that gluten free diets definately help correct mental illnesses. Also, there have been links to Schizophrenia, Alzheimer's, ADD, ADHD, Autism, and all kinds of others through heavy metal poisoning, Yeast Candida, and other dietary sensitivity issues. Once people went off of what they were allergic to (gluten, dairy, etc.) they symptoms disappeared completely! It is amazing how food can be a cure. If only more documentation existed, many other people would be walking around medication free like you!

Sincerely,

NoGluGirl

tarnalberry Community Regular

Welcome to the board! You sound like you've had a rough road of it, and I hope it gets better from here.

As for the social situations, they can get tough, but *you* don't have to buy into them revolving around food. You can go to a restaurant, while your friends eat dinner, and have nothing but a glass of water, and still have a really good time enjoying the lovely, entertaining company of your friends - because the real reason you're there is your friends, not the food. It's hard to make that transition, and the expectations are always on us, so sometimes, we have to 'demand' places that are friendly to gluten free food, but we can separate the social activity from the physiologic one, and it really can help. (And you can go out with your friends doing other things than eating more often - dancing, bowling, hiking, etc.)

Archived

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

  • 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 replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.