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Happy Yet Frustrated With New Diagnosis

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Posted 07 December 2011 - 10:08 PM

I have had a stomach ache pretty much my entire life! I also have had bouts with depression, anxiety, and anger issues. I have had to have thousands of dollars worth of dental work done because some of my permanent teeth never developed. I have had serious menstrual difficulties. I feel like I could just pass out every time that I eat. Now, I know why! Yet, it is so difficult. I bought a lot of gluten free food the other day; I made it an adventure. Yet, label reading is so difficult. I am trying to read carefully all labels, and I was doing well for the first few days of being diagnosed until...beer. I wanted to try a gluten free beer, and I had read that St Peters was gluten free. Well, apparently not all of the St Peters beers are gluten free. After consuming almost all of a cream stout, I decided to read the back. Three kinds of barely are used to make it. Crap. So, now I'm starting over with this diet. My stomach has not gotten better since I've started, and now I've set myself back. My question is, how long did you wait until you saw results from your gluten free diet? I want to feel normal for the first time in my life, and I'm so angry with myself for screwing up with the beer that I almost cried. Would a total body cleansing help, or should I just stay stringent with the diet? This kind of sucks lol but there are a lot of great alternatives out there: Amy's gluten free pizza, for instance. :unsure:
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Posted 07 December 2011 - 11:18 PM

Congratulations on your diagnosis. Keep reading labels and educating yourself on what yu can and cannot eat, lot of good info right here on this site. For me, I wanted to know just how sensative I was, could I have any gluten? I also wanted to make sure of what was suspected and so I consumed gluten here and there as experiments at first, realizing the longer I was off glutens the more sensative I became. I cannot even have a crumb now without becoming sick for 3 weeks. Because of all the experimenting and mistakes it took me a good while to get better. Once I tightened my diet, cleaned up my kitchen, changed my make-up and got real serious about what I was consuming it took me about 4 weeks.

Pizza and cinnamon rolls were my 2 big misses. There are gluten-free pizza crusts and I buy a frozen gluten-free pizza which is actually pretty good and it takes the edge off missing these foods. I make my own cinnamon nut muffins and while it is not Cinnabon, it is a close second especially for gluten-free.

There are also gluten-free beer, could mention brands myself but I do knwo they exist.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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Posted 07 December 2011 - 11:29 PM

Hello Desi, and welcome to the board and the trials and tribulations of living gluten free.

Initially it is a big shock and a hard ask t eliminate the gluten from your diet. We have had members who have burst into tears and go running out of the supermarket on their first gluten free shopping expedition. So don't go expecting it to be easy. On the other hand, once you get the hang of it it isn't really all that hard. It is just a big change. All that label reading!!! :unsure: :rolleyes:

So the best way to ease into the diet is to forget the processed stuff, things with more than three or more ingredients. Eat the naturally gluten free, whole, unprocessed foods around the outside walls of the supermarket --no,no, walk right past the bakery :D Buy the meats, the fish, the vegetables, the fruits, the cheese and yogurt (if you are okay with casein) - forget the milk and lactose products for now because you won't be able to digest those, most likely, and will have to do a trial on the cheese and yogurt too. You can sneak into the ceter of Whole Foods, for example, to buy some Tinkyada pasta and some Udi's bread, along with some rice, and then skadoodle right back out again and go home and cook - I hope you do cook, because you are going to have to learn if you don't.

So now you have done your shopping you can cook simple foods, broiled, poached, sauteed in olive oil fish and meats. vegetables, rice, potatoes, pasta, fruits for dessert, nuts and seeds for snacking, also carrots and celery - my goodness, you are going to be healthy!!! You can also have a glass of win with dinner, or a spirits cocktail, go easy on the caffeine, drink lots of water. Once you have stabilized on eating like this you can start adding back in the things (one every 3-4 days) that might give you trouble - things like corn, eggs, soy - even the nightshade family gives some people trouble so be on the lookout for tomato and potato problems, but it ain't necessarily so.

Then you can start thinking about the gluten free substitute foods, things like Panela's baking mix, Van's waffles, taking note of any reactions you have and abandoning things you initially react to - you might be able to add them in again later. Bly now you are reading labels and will look at the beer label before you put it in your basket, and you will have learned from reading what to look for - Rome wasn't built in a day and there is a learning curve. You just have to make sure you go through the stages of crawling, walking and running :P

Try not to be impatient - it is not like turning off a faucet and you are better. You have a damaged gut and you have to heal before your digestion gets better. Along the way you might need to take some probiotics, some digestive enzymes, have your nutrient levels tested by your doctor for malabsorption, check your thyroid, have a bone density scan if your B12 is low. But right now, just start cooking yourself some wholesome, naturally gluten free food. A crockpot is ideal for this. And treat your tummy gently - don't give it too much raw stuff to deal with at first.

Good luck on your gluten free journey. :)
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 07 December 2011 - 11:29 PM

You will make mistakes in the beginning. Perhaps it would be best to stick to a very simple diet of whole foods that you make at home in the beginning. Also... Did you go through your kitchen and get rid of or replace any potential sources of cross contamination? Such as non-stick skillets, toaster, wooden spoons, plastic colander?

My daughter has food allergies and not celiac. For her she started to get better right away and then at about the 2 week mark she got so sick to her stomach she had to stay home from school. She was also super cranky.

And then the next day? She got a lot better.
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Posted 08 December 2011 - 05:32 AM

Hi Desi,

Welcome to the boards and your new health! :)

I would echo everything mushroom said (those 'shrooms can be pretty smart sometimes), as well as suggest you get the book Living Gluten-Free for Dummies. Seriously. It helped me a lot.

I also wanted to suggest that you do go to whole/unprocessed foods for a while. Untreated celiac disease or non-celiac gluten enteropathy seems to often cause people to develop reactions/sensitivities to other foods. For many people these will clear up after you have began healing. For some they don't. Also, the gluten issue can mask other serious issues.

For example, my untreated celiac disease masked the fact that I cannot eat soy in any form. I don't have an allergy in the conventional sense, but if I ingest soy it causes some severe psychological and neurological issues that take a couple weeks from which to recover. It took me an additional three months after going gluten-free to discover this, which is when I went to a whole/unprocessed foods diet (GAPS diet).

It was a good year before I could eat peppers again without having some reactions, but now I'm fine (as long as I don't eat an entire quart of pickled jalapenos). *sniffle*

There is another reason to switch to a whole/unprocessed foods diet for a while. It allows you to try different types of gluten-free foods/cooking and find out if you are reacting to gluten-free foods that aren't really gluten free. Some gluten-free foods may satisfy the labeling requirements for gluten-free, but still be over what your body can tolerate. This may not be the case, but it may be. It is really hard to tell for many people in the first few months as they try and do a 1:1 substitution of gluten-free foods for non-gluten-free and it gets very confusing and stressful for many.

My recommendation to newly diagnosed or people who are just wanting to test out a gluten-free diet is always: switch to whole/unprocessed foods only for at least two months.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(



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Posted 09 December 2011 - 07:33 AM

I'm hearing a lot about digestive enzymes. I have some that I bought from the Vitamin Shoppe and the ingrediants includes milk. I'm also going lactose free. Do you think I should ditch this bottle for one that has no dairy OR do you think the milk traces will be so small that it shouldn't be an issue? Thanks!
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Posted 09 December 2011 - 06:40 PM

I have been gluten free for a week. So I might have been at my own grocery store taking 2 hours longer than normal to fill my basket the same time you were struggling with yours! I have found these discussion board forums really helpful. Definitely has helped me understand a lot of things that the doctors never bothered to go into (like withdrawal symptoms! I have been a major crab this week- and an incredibly hungry and tired one at that- apparently it can be attributed to our new diet.
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Posted 09 December 2011 - 09:11 PM

I was an experienced label reader pre-celiac diagnosis because of sulfite and msg intolerances and I still get caught. I get home and see barley malt very clearly written on a label I read 3 times in the store, and try to figure out how I missed it so I went to the whole foods pretty early on. It was either that or hire a personal shopper. I didnt know then that we can develop other food sensitivities so I am glad I went that route.
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