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


a*lone*star

Recommended Posts

a*lone*star Newbie

Hi. I was diagnosed with coeliac in April and am still struggling tremendously. I am really looking for day to day support as well as as much information and advice I can stomach (hehe!!)...

Thanks


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Hi. I was diagnosed with coeliac in April and am still struggling tremendously. I am really looking for day to day support as well as as much information and advice I can stomach (hehe!!)...

Thanks

What are the trouble symptoms/issues you are needing help figuring out?

GlutenDude Newbie

Patience. Patience. Patience. When I was first diagnosed, I read all the stories how people stopped eating gluten and felt better immediately. So I expected it to happen to me. But, alas, it took me a few years to really start to improve. Just keep being extra careful about what you eat, exercise when you can and in time, your body will begin to heal.

sahm-i-am Apprentice

Welcome! When I was diagnosed last year it came as a complete shock - I never had any symptoms at all, they were searching for cancer. And while I didn't have the healing issues that come fast for some and slow for others I did have the emotional and mental issues. You will go through a grieving process, angry one minute and denial the next. Finally, after a year and a half, I can say I'm at peace with this new lifestyle. It isn't a diet - you really have to change the way you view things. It can be a struggle for some and a breeze for others; but this place truly helps!

Bubba's Mom Enthusiast
:D Hello and welcome! You can ask your questions and voice your concerns here. We're all walking the same path.
kitgordon Explorer

Hi and welcome aboard! This is a great place to get support, as well as answers for any questions you may have.

a*lone*star Newbie

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)


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



Celiac.com Sponsor (A8-M):



KikiUSA Explorer

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)

What your going through is very normal. I think all of us has felt this way but it does get better with time. It took me along time to learn how to make enjoyable food and I think for months I was on eggs and rice lol. Try looking up gluten free recipes, I have found some really yummy ones.

It is very important to have someone who supports you so I am glad your here, there are lots of people here who will help you get through this difficult time.

As for my periods, yup they did change alot. Sometimes I have 2 a month. Hang in there ok and I hope you feel better soon.

jswog Contributor

Not been work today and just ate plain crackers :(

Plain crackers? You aren't talking something like saltines are you? I have yet to find anything that I'd consider a 'plain' cracker that is gluten free...

Jen

rana Rookie

Its so nice to see so many helpful replies, I get on here sometimes after getting glutened to just to feel better about everything. For me, my denial kept me from getting healthy for a long time and not wanting to admit or simply just didn't realize how sensitive I really was to gluten. I knew I shouldn't eat certain things, that little voice in my head (which is amazingly never wrong) would tell me to not eat it, but I would, because I wanted it, because I felt like I deserved it, because my friends were eating it, then I'd pay the price. I still do this sometimes and its been two years. Once you finally start to feel better, it took me almost two years, you have too much to lose and you don't bother making needlessly risky decisions. You don't even miss that food, but, boy, you sure grieve its loss for a while. At least I did.

Another thing that helped me tremendously was the addition of green smoothies to my diet, basically fruit smoothies with spinach or kale or some other greens added in. It looks ridiculous but tastes delicious, you can't taste the greens I promise! I had to be really careful at first which fruits I put in as I couldn't tolerate a lot of raw fruit or veggies at the time, but I could tell my body was finally getting the nutrients it so badly needed to heal and in a format that's easy for the body to absorb. I drink them every day now, I even crave them. Its way easier to get the five in when you can just drink it down....

cap6 Enthusiast

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)

I so understand! I ate tons of junky food, little veggies or fruit and still don't like to cook - or know how to very well. My advice? Go slow. Don't pull out the complicated recipes - I stuck to ones with 5 ingredients max. Learn a couple of things and slowly you can add more. I am not quite 2 years gluten-free and learning to branch out with my cooking.

As for the dietitian, take the knowledge and go slow. Add healthy foods in slowly. If you look at the whole picture it is over whelming so break it down. Start with a healthy breakfast and work on that till it becomes habit. Then add in a healthy snack, then lunch and so on. don't beat yourself up. I still have a problem with getting enough servings of everything especially fruit for whatever reason.

Please don't eat anything gluten. You will undo all the good that you've accomplished.

AVR1962 Collaborator

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)

Everything you have described is so normal. It is a real adjustment and it takes time to wrap your head around all this. We basically have to give up our old cozy eating habits and find a new way to eat, and at first that seems real limiting. However, once you get the hang of what you can and cannot have your world starts opening up to more options. There is a real good continual post on this site that is under Recipes and Foods" asking "What is for dinner tonight" which might give you some ideas. For now though, getting back to basics and going with raw foods, all natural, is best to allow some healing.

It does take family members awhile too. My adult daughters went gluten-free over 2 years ago and when they did, I didn't understand. Now I am in that boat, have been gluten-free over 6 months and hubby keeps "forgetting?" He has even told our friends that he thinks my system is still messed up from a liver cleanse I did a year ago. I just tell them I have been diagnosed with celiac and have gotten better being gluten free.

Words of advise to add to your vit testing which I agree is very important, many of us become deficient, keep a journal so you can look back and see what you ate that may give you trouble down the line. Read labels. Keep your diet clean. Learn to ask questions when you go out. Take no chances. Take food with you if you are going to be away from home just incase you get caught in a situation where you have no gluten-free options.

You really will get to feeling better and once you catch on to what you need to do to make yourself healthy you will not question going back to your old ways.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.