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Newly Diagnosed... Where Should I Start?

kstahl3

By kstahl3
in Coping with Celiac Disease

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kstahl3 Newbie
kstahl3
Posted

Hi all... Holy Cow, there is a lot of information out there about what to do and what not to do while trying to cope with this Celiac Disease... Celiac has just been added to my list of "stuff" after a recent biopsy, along with Ankylosing Spoldylitis, IBD, Fibromyalgia, CFS, and degenerative disk disease; it seems that if you name it, the doctors can tell you that I have it in some form or fashion; and I am only 26! I am drowning... I need help! I have zero support on the home front, neither in the form of family or friends because after so long of being simply miserable people find it easier to just walk away. I am sure someone out there has been through that and knows how I feel.

So, I guess, where I was going with all of that whining was, where should I start? What should I read? How should I educate myself to know how best to get healthy? I just want to be healthy and pain free, though I think the two may go hand and hand.

Thank you!

Kelly

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ang1e0251 Contributor
ang1e0251
Posted

You are in the best place there is to learn about celiac disease and it's myriad secrets!! Welcome to the forum and simply start reading. There so much info here and so much to learn.

no-more-muffins Apprentice
no-more-muffins
Posted

I think you should get some books from your local library or bookstore.

Here are some I have read:

"Celiac Disease" by Peter Green

"Wheat Free Worry Free" by Danna Korn

"Healthier Without Wheat" by Stephen Wangen

"Gluten-Free Baking Classics" by Annalise Roberts

There are many more books out there. As far as the diet goes, start with the obvious sources of gluten (bread, pasta, pizza) and eliminate that. Then start reading labels of things with "hidden" gluten in them (salad dressings, spice mixes, etc.)

I'd also head over to your local health food store and stock up on some gluten free stuff to get you going. It is good to have things that you can grab and eat when you are too overwhelmed and busy to think about what to cook. I don't use a ton of that stuff, but it is nice to have at first when you are trying to figure out what to eat. If you like to cook and bake, I'd definitely suggest getting some flour. The Gluten-Free Baking Classics book gives some great advice regarding which kinds of flours to buy and how to make wonderful gluten-free breads and baked goods. It is a great book.

And like the pp said, spend some time around these boards because the people here have so much info. And try to relax. I know it is hard at first but realize, you can substitute almost anything you want with something gluten-free. And there are more and more gluten-free products available all the time so it really does get easier.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

A huge help for me was to make a list of foods I already cooked and see how I could adapt them (if necessary, many were already gluten free just because they were). This helped me tremendously in planning meals and shopping. It was a great way for me to get organized and manage all the changes. It was wonderful for things like leftovers as well. I could plan out things like having white rice for dinner and then turning it into fried rice for the next day's lunch. Or pot roast on Sunday became Monday's stew. Ham become ham and beans...well you get the picture. I wasn't much of a cook, so I really needed this. As I've become a better cook and more used to gluten free live, I still keep it updated (I made it in Excel), prettied it up and keep it posted to our fridge.

The first couple of months are very overwhelming, but it really gets much easier. Just dig in like it's a new hobby and you'll be fine! And I think you'll probably be surprised how much better all of your aches and pains get on as your body heals.

Oh, some people have trouble with dairy products when they are first healing. One, I'd recommend waiting to remove dairy until you know it's a problem - you have enough to handle right now. Two, the problem with dairy is that Celiac disease can damage the small intestine so badly that you can't digest the milk. It usually is NOT necessary to remove all dairy/casein. Three, it's usually a temporary thing if you have to deal with it all. Once your gut heals you can digest the milk again. But again, this is just a precaution. You may not have any issues with milk at all.

Welcome to the forum and I hope you're feeling fabulous soon!!

Mskedi Newbie
Mskedi
Posted

I found Korn's Gluten-Free Living for Dummies to be helpful and positive. It might be a good start.

kstahl3 Newbie
kstahl3
Posted
  • Author

Thank you all for your feedback! I am ready to just give up eating all together... ;) If only that would work! I have picked up some good tips just in the short period of time I have been browsing this site. Thank you again for the information and I will keep looking around. Hopefully I can get a grasp on things and it will come together well.

ranger Enthusiast
ranger
Posted

Welcome. This is the place to be. When I first discovered this forum, I lurked for a long time. Just read and read. You'll find the info you need. For now, stick to basics - fresh fruits, veges, lean meat. I'd lay off dairy for awhile, and proccessed food. Good Luck. Read on!

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LDJofDenver Apprentice
LDJofDenver
Posted

It can be a little overwhelming at first. We

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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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