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Struggling - The Hardest Part

webbooo

By webbooo
in Coping with Celiac Disease

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webbooo Rookie
webbooo
Posted

Hi all,

 

I was diagnosed with Celiac disease about 8 weeks ago after having some blood test taken.  I have suffered generalized anxiety in the past and feel what I eat has an impact on this.   i have been on a Gluten free diet and generally feeling OK, have tried experimenting with bone broth, fermented vegetables and cakes which I have really been enjoying.  Its also made me realize that for most of my life I've been a sugar addict,  I would always prefer a desert before a main meal and always craved sweet foods.  The last few days and today especially have been horrible, today I even left work early as I'd been feeling weak/light headed and have little energy, my muscles feel weak.  I ate out on the weekend at a Restaurant and although I 'ordered' gluten free feel like I may have eaten something which wasn't.  I'm not sure if I'm lacking calories or have some other deficiency but feeling like this sucks.  It feels like a battle where I'm always checking what goes in my mouth, what I'll eat in the future or what I ate in the past.  Its also hard as not a lot of other people understand.

 

When I was diagnosed with Celiac a part of me thought it was a chance to get my health back on track but I'm now realising that its a life long commitment and it not always going to be easy.  I have a busy job, normal relationship difficulties and 2 beautiful kids under 4 so life has its normal stresses as well.. At the moment I'm just sick of it and want to lie down and sleep, I'm sick of feeling s$#& all the time and feeling tied even when I have sleep for 7 hours.

 

Thanks for reading,  I am curious if anyone else discovered they were deficient in something after been diagnosed and is there a light at the end of the tunnel?

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Jays911 Contributor
Jays911
Posted

It is a struggle, but one well worth undertaking.  I have been gluten free since the beginning of the year, and feel so much better now.  It takes a while, but you will find foods that are good for you and that you like.  Same with gluten-free restaurants and menus.  Keep the faith.

mamaw Community Regular
mamaw
Posted

hello, yes, yes, yes, to light at the end of the  tunnel!!!!  It  takes the gut  a lot of time  to heal from all the years  of damage & many times the  gut  fights back...For  some  they feel better  in an instant for others  it can take a couple  of  years.... you need to be  patient  with   yourself... Eating    lean, clean  healthy  foods  can be a  big  help  in  allowing the gut  to heal...So  if  possible  stay a way  from  processed  junk food for  at least 3-6  months.. If you are  craving  something  then  have  a small  amount   to  satisfy  your  craving...you may have  gotten gluten  from eating out   or  it  just maybe  the gut  telling  you  to give  it  plain  gluten-free  foods.  The  stomach  can get  over load  from  the foods  you  eat....Your  illness  didn't  happen in a  day  &  your  healing  will not  happen in a  day....

Once  your  gut  heals  &  you  absorb  the food  you  are  eating  you will soon learn  that  all the  sweets  packs  on pounds  .I too was a  sweet  eater  from a very young  age...

You also may want to consider  getting  your  kids  checked as well....

With  celiac  we  do lack  nutrients  such as  B-12 Vit D, Calcium,  magnesium  & more... bone loss,  Many of us  have  developed  other  autoimmune  disorders  like  thyroid issues, osteoporosis  & others....

 

The  great  news  is  this is all manageable & becomes  second  nature once  you get through the healing process. 

 

Some  things to decide  is  will your house  to  all gluten free  or   dual  ?  You will need  to  take  care of  yourself  at home.  Small kids  , big messes.....wheat  crumbs  in toaster  ( get  yourself a  cheap one for  gluten-free  only).... cooking utensils & pots & pans  should  be okay  if  no  scratches or  gouges in them.... no  double  dipping  into  jars  of  things .. A few  crumbs  from  wheat  can cause a reaction.....

 

Make  your self  a gluten-free goodie  bag  for your  car,  work  , this way  if  an unexpected  happens  you  will have  something  to eat & not be  tempted  to eat  a  gluten  food.... After  you are better  & healthy & decide  to  dine out  look  for places  that  offer  a gluten-free  menu. As  you  know  that is not  100%  always  safe  either  but  it  is better  than  cold  turkey...when  we  do Italian  I always  take  a breadstick  or  Italian gluten-free  bread  in my purse....Hamburger place  take  a gluten-free  bun  if  they don't offer....

 

You  will be okay  just  give  the  body time to heal.....

RMJ Mentor
RMJ
Posted

When you were diagnosed did they do any other blood tests? Could you have anemia or a vitamin deficiency?

kerrygirl15 Newbie
kerrygirl15
Posted

Hi,

I was diagnosed a few weeks ago too.I'm finding it ok so far.I'd do anything at all to not be sick all the time so going gluten free isn't too much trouble for me.

I was in hospital for septicemia when they tested me for celiac disease.I had had a blood test when I was 17 for celiac which was positive ,when they did the biopsy that time it was negative for celiac but it turned out I had non hodgkins lymphoma.The bloods this time were positive again and when I was out of icu they did a biopsy which was positive for celiac disease.I was severely anemic and my platelets were extremely low so I had a number of blood transfusions now I don't know if that was from the sepsis or celiac maybe both.I am also very low in vitamin B12 at the moment and have to get injections every week.My magnesium and potassium is also low at the moment.I am still quite anemic and I have to have iv iron infusions until it's right again.I do feel a lot better than before I am still very tired and stay in bed for pretty much the whole day but I am getting there.I know it'll take time to feel healthy again but I am an extremely patient person so I think that's a good thing for me.

Maybe you are anemic or have vitamin B12 deficiency?

Try to be patient you will get better well I hope anyway!I always say I will get better I think that's what has got me through the last few years!There has to be light at the end of the tunnel!

Hope you feel better soon.

StClair Apprentice
StClair
Posted

I was diagnosed at about the same time as you and am in a similar mind space. Between the gluten-free, acid reflux/gastritis and lactose/fructose intolerance diets there's not much left to eat (I don't like red meat or fish, only chicken) and I'm still losing weight. I've had some improvement, I think, with digestion, migraines and anxiety, so that's something good, but I continue to be paranoid about accidentally ingesting gluten. I'll get scoped again this summer if the reflux doesn't improve, and that will give me a chance to see how my small intestine is looking. Hang in there. We will make it.

webbooo Rookie
webbooo
Posted
  • Author

Thanks everyone for your responses, I really appreciated reading your replies.  I have been to the doctor this morning and given a round of bloods and also provided a stool sample so I'll go back in a few days to see what transpires.

 

One thing I discovered last night was the Multi Vitamin I've been taking 'herbs of gold' contains Gluten.  I couldn't believe it but I think it was me just getting used to the lifestyle that I neglected to really look into it.  Nothing was mentioned on the label to say 'Gluten free' so I only discovered it once I phoned them up and asked.  Hopefully the other test come back OK.

 

Does anyone use or can recommend a good Gluten Free Multi Vitamin? and does anyone eat processed Gluten Free foods (breads and biscuits) from the shop?  I see a lot of do and dont's about all the Gluten Free foods (high carbs and sugar) that are available today but sometimes when I have a craving a couple biscuits really helps.

 

cheers

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mamaw Community Regular
mamaw
Posted

If  you google  gluten-free multi vit & min  many will come  up...

cyclinglady Grand Master
cyclinglady
Posted

Indulge and have a gluten-free biscuit! Things will get better!

Celiacandme Apprentice
Celiacandme
Posted

I'm sorry that your vitamin had gluten in it. So glad you caught that now!

 

Keep us posted on the results from your blood work. Glad you went in for testing. You may very well be deficient in something! Vit D, iron, etc...

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