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Shann

If you could go back in time to the day you were diagnosed, what would you tell yourself if you were nervous?

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Warm Greetings...

I'm seeking support or advice, as well as some words from the wise.

D-day has come: I'll receive my diagnosis in about 4 hours.

I've known for a few months now that Celiac disease is likely the culprit to what ails me, so this isn't new news to me. I should feel relieved. 

Yet...I'm suddenly feeling sad, anxious, and overwhelmed. 

I've been soooo, soooo sick for over a year now (on top of having a very rare debilitating condition called Isaac Syndrome...AND other crud). I'm beyond ready to reclaim my life!

Like every other one of you beautiful people who are part of this pristine community known as Celiacs, I went through a host of testing; the last of which was the endoscopy w/ biopsies.

After said endoscopy [and whilst showing me pictures of my innards], the doctor informed me that I have celiac sprue and all sorts of other fun G.I. issues that I was completely oblivious to. He explained that in spite of the appearance of my duodenum, a Celiac diagnosis couldn't be affirmative until the biopsy results were in.

Being one who always puts her infinite wisdom to good use (snicker, snicker), I decided to view my biopsy results online, reasoning that it would give me a chance to better prepare some questions for the specialist.

Needless to say, that may be what cost me this night of sleep. I absolutely, positively have Celiac. I was perfectly fine knowing that this was a very high probability just yesterday. So why am I upset? I've had months to come to terms with this and be ready. Yet something about confirmation made me have what the docs may call an 'adverse reaction.' There's no logic behind this (my mental state of angst).

Okay...now that you've made it this far, I pose the same question I entitled this post: If you could go back to the day you were diagnosed, what is some advice that you'd give to yourself, knowing now what you didn't know then?

Any advice would be appreciated as I'm truly stressing out.

Thank you! 

~ Shann

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Hi Shann,

Welcome to the forum! :)

Hmm, what I would tell myself?

Well, be patient with your progress.  Going on the gluten-free diet isn't an instant cure to all your health problems.  It does help a lot, but it takes time to get better, possibly years.

Gluten is not the only possible problem food.  Besides wheat, rye and barley, oats can be a big problem too.  And milk.  Plus soy and nightshades, carrots and celery and caffeine.  It will take time to figure out all these additional food intolerance problems, and you won't feel right until you get them out of your diet.

Plan on sticking with a very simple diet for at least 6 months.  Basic meat and veggies, nuts, eggs, some fruit.  Don't eat out, don't eat sugary or carby foods.

Understand that an elimination diet or 2 or 3 are in your future.  But they will help identify those additional food intolerances and make things better.

Remember you didn't get sick in a day and you won't recover in a day.  But things can trend upwards even if slowly.  Even if some days it seems like I am going backwards.

Try some selenium for fatigue, like eating few Brazil nuts now and then.

You'll be low on vitamin D for years, even after going gluten-free.  So learn about vitamin D and how to improve your levels.  Check out the vitamin D council.  Eventually you'll end up getting rx vitamin D pills.

Keep plenty of aspirin and Pepto Bismol on hand.

Learn to eat corn tortillas and wraps instead of gluten-free bread.  gluten-free bread is way to $$$ to eat all the time.

Take it easy on alcohol and try to get lots of sleep.  Which isn't easy sometimes.

Peppermint tea is helpful for gas/bloating.

The first few years may be harder than the rest.  Maybe the first 5 years.  But things can get better.

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In my case, I had a few other issues, I would have told myself to drop oats then also, and forget about processed foods and go for a whole foods only diet. I also would have given myself advice on treating my then undiagnosed Ulcerative colitis issues by telling msyelf to adopt a paleo based diet leaning towards a akins/keto ratio of fats and protein low carb.

Doing so would have really sped up my healing process lol, the low inflammation diet basis and at the time would have been less overwhelming to just look at meals searching "Paleo" "Atkins" "Keto" and making sure to avoid stuff from the NO list. Probably would have also left a note about good and bad days and a roller coasters of it from the healing, and clearing out of my body as it found a new normal and the immune system cranked down.....Food diary would have been implemented WAY earlier to find intolerance issues.

I would have also given myself a list of supplements to help with anxiety, fog, and deficiency issues and dosing. Including stuff like Liquid Health Energy & Stress, Neurological support, Natural Vitality Magnesium, and the stuff for my UC early to help it heal.

And last but not least....I would have told myself to make my own kitchen area in my own room away from the family, and just invested in new microwave and combo crockpot/steamers along with nordicware microwave cook ware......would have saved so many fights with my family about cross contamination and making me sick.


 

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Posted (edited)

Relief.  I had been so fatigued from anemia.  I have Thalassemia, which already caused my hemoglobin levels to be under range, but my body had been compensating for it my entire life.  It was the additional iron-deficiency anemia that literally wiped me out (that and 30 days of periods thanks to menopause).  

I saw my blood test results.  Just one positive (DGP IgA) but I knew in my heart, that celiac disease was the cause of my anemia.  There were little signs too that in retrospect, like my Thalassemia, I had adapted (all my doctors ove the years assumed my anemia was due to Thalassemia or heavy periods).   Like being little, never overweight despite a voracious appetite, GI issues that waxed and waned for decades and allergies.  

I had a distinct advantage over many of our members.  My hubby had gone gluten free 12 years prior to my diagnosis per the poor advice of my allergist and his GP.  The gluten free diet worked for him.  I did all the food prep and cooking for him, so I knew exactly what gluten free meant.    I also knew that he was healthy because of the diet.  I was ready to feel good again and to be rid of my constant fatigue.  

Oh, I have had  had a few setbacks, like everyone else, but I am much better.  My celiac disease is in remission.  Healthy villi on my last endoscopy/biopsies.  

You will find your way.   Heed the advice of seasoned members and I am sure you will heal much faster.  Maybe, just maybe, your Issac Syndrome will resolve or go into  remission.  My thyroid nodules and enlargement are now gone thanks to the gluten-free diet (mostly Whole Foods and not processed).  You just never know.  Food can heal!  

Welcome to the forum!  

P.S.  Grieving is normal.  Expect to go through all the stages of it.  

Edited by cyclinglady
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I would tell myself to get a vitamin panel done. To search gluten free on Amazon. That I am going to be healthier than most because i am cutting out processed foods and restaurants forever. To be my own advocate and best friend because doctors know little about Celiac and they will suggest things that could expose me to gluten. That my dilligent research, calling manufactuers and farms, is not paranoia but responsible protection. That others, friends and sometime family members will not understand my disease and that for my safety i must be impolite by refusing food items. Finally i would say, yes this is a time consuming disease but thankfully one that i can manage.

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Posted (edited)

Thank you all! I'd have gotten on here sooner, but a personal tragedy struck so I'm a messy wreck right now. 

I shall take the advice that you would have given yourselves, utilize it to the max, and then pay it forward! Retrospective advice is among the best! 

The G.I. doctor who delivered my news also has celiac, which was reassuring and beneficial. Right now I'm just so overwhelmed. I'm a single mother, on disability, barely scraping by as it is. I have NO CLUE how I'm going to be able to afford this. I'll be honest: I was eating grotesque Ramen noodles or a package of crackers 5-7 meals/week just so my little girl can eat healthy. Now I have to buy supplements in addition to different food (I'm anemic: iron & B vitamins were too low and vitamin D level was horrible). Worse, my daughter may be a part of our elite club as well (she's getting tested tomorrow). Not that I should worry yet, but how do I not, right? She has had tummy issues her entire life; but docs don't know the cause. While they tested for some food allergies, they didn't check her for gluten sensitivity. Her issues began as soon as she started kindergarten (she just finished 2nd grade) which is also when her dad left us. 

Anyways, I appreciate all of the insight you each offered.  I look forward to the day when I have a better understanding of and grip on this. I know I'll be ok and that I have a long road ahead of me. It's comforting to know that I'm not alone, and it's truly awesome knowing that no matter how long it takes, I WILL get better.

The way I see it, as sick as I've been this past year, what's another year or two? As long as I'm making progress - even the slightest & slowest of - I can handle it. I know it'll take longer than a few months to feel significantly better, but I also know that I'm pretty much guaranteed to begin noticing small improvements after just the first month (if not sooner). Even if I'm still having symptoms in a year, I won't feel THIS crappy. At least not physically ;)I'm currently sooooooo sick! To make matters worse, I'm stressed, depressed, heart-broken; and I feel as though the news of a loved one's medical state has sent me into some sort of detached mental funk that I've never experienced and don't know how to handle. 

But life always works out... Somehow.

Well Cheers (raises glass of water): To continued improvements in our health and lives! 

~Shann

Edited by Shann
Grammatical errors

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Really the gluten free diet does not need to be expensive.  Beans and rice.  How cheap is that?  Just buy dried beans and rice (visually sort and wash).  Eat for days (add in to your diet: veggies and fruit, eggs (other protein sources), dairy, nuts), and freeze in smaller portions.  Corn tortillas freeze well too.  Cheap.  Look for sales.  Want chicken, but it is not on sale?  Skip it.  Wait for the sale and buy then. 

I take no vitamins.  I have lots of allergies, so I avoid them.  My vitamin and mineral levels have recovered and my villi have healed.  But if you are not going to take vitamins, you need to eat a varied healthy diet.  

Consider going to a food pantry.  We support our local pantry with gluten-free pasta and other shelf stable gluten-free items (they have naturally gluten free items too).   If they do not have it, they can get it (if they are a good pantry).  Ask for help!  

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Oh boy... to my 18 year old stubborn, angry, sick, underweight, severely anemic, scared, lonely and upset self:

I would say to go gluten free when I first found out I had the allergy to save myself the grief later of leaky gut and a million other issues.

Gluten free life is amazing now because my energy increases more and more everyday and I can do almost all of the fun activities I love: biking, going to the gym, walking, swimming, hiking and running.

I would tell myself to go to mass and Adoration more. To trust God more and to worry less. 

I would tell myself to not be so angry and to be thankful for the time I had with my friends senior year, even though it was very limited. To be so thankful for having a beautiful new chapel to go sit in and cry at lunch time and during study hall. 

I would also tell myself to not be such a drama queen, to not sneak gluten 40 million times but to trust in God that being gluten-free would not be the end of my world, but the start of a new and better life.

I was acutely sick for about a year and a half. I lost a lot of close relationships and my fun and joyful personality. 

Presently, my personality is coming back more and more as I heal, absorb nutrients and see results firsthand. This experience taught me that God gives and he takes away. And that when his perfect timing allows, the gifts he has given to me are more than I could have ever hoped for.  

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