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Recently Diagnosed

Ryan7194

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Ryan7194 Rookie
Ryan7194
Posted

Hi all, I suppose I'm just after some reassurance about the gluten free diet.

I have been misdiagnosed since I first got sick over 4 years ago. Last week following positive blood tests I was diagnosed with celiac after a positive biopsy along with gastritis.

Since going gluten free I feel absolutely awful. I have severe stomach pain, bloating, gas, nausea and altered bm. I know I'm only 5 days in but I'm struggling to get through the days at work.

My diet before being diagnosed was very bland with only normal meats, veg, biscuits, cereal and bread. I have only needed to swap out the cereal, bread to gluten-free and remove the biscuits from my diet. Other than that my diet is the same as it was before diagnosis when I was feeling the best I had in years.

Any suggestions, tips, motivation would be appreciated.

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bartfull Rising Star
bartfull
Posted

Welcome tothe best celiac forum in the land. :)

 

What you are going through right now is gluten withdrawal, a very real physical thing. You'll get headaches, mood swings, ravenous hunger, and a sort of dreamy, light headed feeling. It lasted two or three weeks for me. Then I started feeling better.

 

In the coping section here, pinnned to the top is a thread called "Newbie 101". You need to read that and be sure to click on all the links in various posts there. It'll explain a lot that your doctor probably didn't tell you, and you will learn how to avoid cross-contamination. Most people are surprised to learn they need seperate condiments and new toasters and wooden spoons.

 

You may find yourself crying at the grocery store a few times at first. A lot of us did. But if you stick to whole foods (meats, fresh veggies and fruit) at first you won't have to worry about reading labels. Shop the outside aisles. Keep your diet plain and simple at first to promote healing and when you decide to try gluten-free bread, get some Udi's Whole Grain. It's (IMO) the best gluten-free bread out there. Not the same as the Wonderbread type breads, more like a french bread in taste and texture, but very good.

 

Read as much as you can here under various topics and then come back and fire away with any questions you have. We've all been through it and are more than happy to help. :)

 

And please, keep in mind that it gets easier as time goes on because you will learn what is safe to eat, and on top of that you will be feeling so much better. I remember being almost obsessed with the diet at first and now it is second nature and I hardly ever think about it through the course of my day.

mamaw Community Regular
mamaw
Posted

maybe think of  it this way. 4  years  your  gut  has been  shouting  , Fighting & kicking  for someone   to help  it but it  fell on deaf  ears... Finally  someone believed  your  symptoms  &  found  you an answer. Sometimes  it  takes  ten years  for a dx's, sad  but true....so now  your  gut  has to repair  all the  damage  & abuse   that it has  endured  for the last  4 years  & maybe even longer....It  didn't happen overnight  nor  will it get better overnight....it seems  you are doing  the right  things..  Celiac  is  like a chameleon  , no two are  exactly alike...  for some  healing  &  health  come  quickly for  others  it can take  several years ...

Some  find  removing  dairy  helps the healing.....

You may want  to  check your household for  any hidden gluten  ie: toaster, wooden  ,plastic, items to make  sure  no  gluten is  hiding...

Eating a  clean "naked  type  diet  will help you recover faster ...

You may want to add  enzymes to help break down proteins, carbs  & so on... I also love  probiotics  but  at present  there is much talk  about  them being CC....I do take  them  but  I'm very selective  &  don't  use  ones  found OTC....that's  not to say  they  are  not  CC. But  I've  using  a  couple  brands for years  now..& feel  fairly safe....

Hope  you feel better soon.....

nvsmom Community Regular
nvsmom
Posted

Oh yeah... withdrawal can be horrible.  Three years later I can still remember that headache and how tired and miserable I felt.  Mine lasted about 10 days.  You should be recovering from withdrawal before July hits.

 

Some celiacs find L-glutamine helps with sppeding up intestinal healing, and probiotics work well for others.  Most celiacs find that keeping their diets free of processed foods helps in the first few months too.  Also, about half of all celiacs can't handle milk dor the first 6 months or so after diagnosis, so giving up dairy may help too.

 

Hang in there.

Ryan7194 Rookie
Ryan7194
Posted
  • Author

Thank you all. I'm just hopping I can soon look back on this nightmare and move on with my life

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      26F!
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