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And So It Begins


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#1 LadyCeliac

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Posted 21 October 2012 - 04:55 PM

Hi!

I'm new to this...2 weeks since my blood diagnosis. I really thought, "well, just clean out the kitchen and pantry and go gluten-free...sure, it'll be tough, but you can do this."

Famous last words.

I'm overwhelmed and feel pretty alone. My doctor didn't just cut out gluten, but soy, dairy, nuts, nut flours, corn and oats because of Hashimoto's thyroid and latex allergies (no avocado, celery, fig, kiwi, etc).

Needless to say, it's been rough. I learned the hard way that girl cannot live on rice and veggies alone. My blood sugars bottomed out and my boss sent me home. Protein is my friend! That's helped. I eat throughout the day. I had gained weight, which is what prompted the doctor's visit, and left wondering what eating throughout the day will do for my ever-expanding waist-line.

I thought that after working to get gluten out, I'd notice at least a little difference. Instead, I feel significantly worse. I'm sleeping about 12 hours a day, which is really starting to impact work/performance, and now my hair is thinning.

Didn't know where else to turn. :(
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#2 shadowicewolf

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Posted 21 October 2012 - 05:46 PM

Dear, what are you eating? Perhaps you can give us a rundown on what you eat everyday and maybe we can, in turn, point you in a good direction.

It is tough. While my symptoms pretty much cleared up a week or so afterwards it took months to get to what i'd discribe as normal. Your body needs to heal and it does take time.

It is generally advised for those who are newly dx'd to stick to a whole foods diet. One of my favorite meals is to make a soup. I take some meat (normally beef) brown it in a big pot, build up a crust at the bottom, then add water, then whatever veggies tickle my fancy that day, a little bit of salt and pepper and sometimes some brown sugar if i want a little bit of a wang, and sometimes serve it with a side of rice.

Eating smaller meals throughout the day instead of three big ones is better for ya anyway :)
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#3 Lisa

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Posted 21 October 2012 - 06:02 PM

Hi!

I'm new to this...2 weeks since my blood diagnosis. I really thought, "well, just clean out the kitchen and pantry and go gluten-free...sure, it'll be tough, but you can do this."

Famous last words.

I'm overwhelmed and feel pretty alone. My doctor didn't just cut out gluten, but soy, dairy, nuts, nut flours, corn and oats because of Hashimoto's thyroid and latex allergies (no avocado, celery, fig, kiwi, etc).

As you should be overwhelmed. It is over whelming! But, can be easily fixed.

May I ask what kind of doctor diagnosed you? I'm not a doctor, but I would assume that your doctor would recommend removing gluten and dairy from your diet first. See how that goes for a month or two and if issues continue, go soy free....a month or two. Well, you get my drift.

You may have been dumped on a bit heavily. And I am not familiar with any recommendations for Hashimoto's, but many others here have.

And a great welcome! :D
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#4 LadyCeliac

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Posted 21 October 2012 - 06:16 PM

Right now, I'm eating rice chex with rice milk for breakfast. I usually have a mid morning snack of veggies or a piece of fruit with a slice of cheese (which I guess I have to give up now that he added the no-dairy piece). For lunch, I try to eat the leftovers from the dinner the night before. Steak or porkchop with veggies and applesauce or beans and rice or veggie stir fry (in fresh ginger and garlic). For dinner, I eat the same kinds of things. Thinking about trying quinoa again, but my doctor warned that cross contamination is an issue and that a lot of people with gluten issues find it acts the same way as gluten.

For snacks, I'll do a rice cake with homemade black bean dip, fruits and veggies.

My doctor is a GI doctor. I told him that, after a positive blood test, I'd try the diet. I don't have good insurance, so doing the endoscopy and biopsy would cost me a small fortune. He's known in the area for doing really good work.

My understanding is that the soy, nuts, and other restrictions contribute to the thyroid issues. Good heavens, I think that's what I remember reading. I know that my thyroid is functioning normally, but the gluten is preventing me from receiving the benefits.
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#5 Lisa

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Posted 21 October 2012 - 06:41 PM

My doctor is a GI doctor. I told him that, after a positive blood test, I'd try the diet. I don't have good insurance, so doing the endoscopy and biopsy would cost me a small fortune. He's known in the area for doing really good work.

If you have a positive blood test, you have Celiac. And there is no need to an endoscopy exam.

How diligent are you on the diet? It can be pretty complex. "And many people, I have talked to, don't take it very seriously."

They're stupid people, don't be one. B)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#6 shadowicewolf

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Posted 21 October 2012 - 06:42 PM

there are a lot of celiacs (myself included) that can handle quinoa just fine. Really, its a pop shot. Some people react to it because they are intolerent to it (not a cc thing).

I can no longer handle oats as it gives me a belly ache, yet there are some who can have it just fine.

See? Its one of those things where you have to try it yourself to see what happens.
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#7 Really good scratcher

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Posted 21 October 2012 - 07:17 PM

So what next? I am trying to cut out gluten; I am new to the iodine thing, so want to cut out Iodine, but wow! Gluten and Iodine are in so many standard things!
I can eat meat--plainly grown and raised. Good I am a carnivore, so that is good. I also love almost all fruits and vegetables. Sigh, huge sigh of relief!
Grains. Still puzzled. Rice is good. Quinoa is good. Seems about it. Not a problem.
I am a baker. Not professionally of course, but my family sure loves it when I bake! I guess I need to find out what grains I can use to bake with! After that, I am just open to see what is available to Gluten Intolerant folks such as I am. Suggestions, especially websites and or LISTS of products that are safe would be so beneficial!
Thanks for all the support!
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#8 Takala

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Posted 21 October 2012 - 07:25 PM

Oh, we have to fix your breakfast of 'rice- rice and sugar' first, then. No wonder you're near passing out. :o Can you do eggs and vegetables ? Pumpkin custard made with non dairy liquid ? Bacon ?

I don't know about all those restrictions. Yes on ditching the potential triggers for latex, and maybe most soy, (some people can put up w/ small amounts of soy lecithin or soy oil) but you may be able to add back in non lactose dairy such as yogurt (you can use yogurt thinned with water on cereal) and cheese. Do you really have a corn problem or just a cross contaminated corn problem ? One way to tell is to try eating a freshly shucked & cooked ear of sweet corn, if you don't have an obvious allergy to it. It's a real challenge to find corn flours in the USA which are not screwed up. Likewise, do you know if you are an oat reactor and must avoid all potential oat cross contamination from things that are not containing oats ? This means you should avoid the Bob's Red Mill products.

Do you know that some brands of Quinoa are less likely to be screwed up than others, and you want to look for the Kosher certified ones like Ancient Harvest ? Do you have to avoid all nuts, or could you find something that doesn't have potential chestnut and hazelnut cross contamination ? http://wiki.anesthes..._allergy:_Foods

What about oils ? Can you do olive oil, coconut oil ? What about things baked like sweet potatoes ?
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#9 LadyCeliac

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Posted 21 October 2012 - 07:57 PM

Thank you for talking with me, everyone...this is all helpful! It's nice to know I'm not alone. I've spent a lot of time this weekend reading many threads on here and, while the amount of info is overwhelming, it's all good stuff.

I can do eggs for breakfast. Honestly, some of it as the convenience piece and the doctor saying it was safe. I think these first two weeks have been desperate for all things safe. Because of the fatigue, I've been getting up for work later than normal, so I often take dry cereal in the car while I'm driving.

My doctor is known for being heavy on dietary restrictions, but my understanding is that the doctor's success in working with patients is great. I'm on the fence. I feel very overwhelmed. The group the doctor practices with offers classes and I'm scheduled to take them, but they just feel 3 weeks AFTER diagnosis. I'd like to think I'll feel less overwhelmed. The doctor's way of presenting information is a bit overwhelming.

I'm on a TON of supplements.

In regards to the questions about being sensitive to corn, oats, etc....I don't actually know how I react yet. I'm still dealing with A LOT of bloating and distention. It's driving me crazy. I'd like to think there will come a time where I will know if I'm reacting. I'm keeping a thorough food log and including how I felt, diarrhea/constipation, bloating, energy level, etc. I figure if the doctor is going to be that restrictive, I'm going to be that detailed. :D
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#10 GottaSki

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Posted 21 October 2012 - 08:01 PM

I'm keeping a thorough food log and including how I felt, diarrhea/constipation, bloating, energy level, etc. I figure if the doctor is going to be that restrictive, I'm going to be that detailed. :D

Welcome LadyCeliac!

Sounds like a very good plan - took me a very long time to figure that one out ;)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 Pauliewog

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Posted 21 October 2012 - 08:22 PM

More things to read, but I think you'd be a prime candidate to follow a "primal" diet. Check out Marksdailyapple.com Essentially you eat proteins and veggies. It is actually rather easy.

Six months after going gluten free I hadn't lost any weight and was just feeling so-so and hungry a lot. Like you, I ate a lot of rice/rice products. I guess I thought I was replacing my wheat. Through this forum I read about primal diets. I had already given up wheaty carbs so I figured I may as well try it. I cut out all the other carbs and sugars. I lost 10 pounds in about a month without trying! And, I started to feel better. I was full and felt good for once. The hardest part for me was eating meats because I have been vegetarian for many years.

As an example, this morning I had two eggs mixed with some green veggies and mushrooms for breakfast. Lunch was chicken with raw carrots and cucumber. Dinner will be chicken again with salad (busy day so I just cooked a bunch of chicken in the morning). I try to alternate different meats each day but stick to the eggs for breakfast. Give it a try. You might like it and start to have more energy.
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#12 GottaSki

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Posted 21 October 2012 - 08:30 PM

Pauliewog is right - Paleo is a very good way to start when there are multiple restrictions plus there are a lot of easy to find recipes.

Wanted to add -- make sure you double check your supplements for gluten, soy and corn - corn is a tough one to get out of supplements.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 nvsmom

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Posted 22 October 2012 - 07:08 AM

(((Hugs))) :(

My first 2 weeks eating gluten-free were very difficult. I went through a withdrawl of sorts and felt quite unwell and incredibly cranky. That could have contributed to your recent down hill slide.

Are your blood levels and vitamins ok? Were they tested when you were diagnosed? Many celiacs have a very hard time getting enough B12, D, iron, and calcium because of the damage in their gut; even if they do take a tonne of supplements. These can all affect your energy levels and overall health. If they weren't checked, you may want to request that it be done.

Do you have Hashimoto's thyroiditis? You mentioned your thyroid was functioning normally so I was unsure. There are some foods that can aggravate Hashimoto's and goiters, but I don't think it's an issue for everyone (I'm not a doctor though). I have Hashimoto's but no goiter at all. I avoid soy because it is the worst goiterogenic food. Some veggoies like spinach and carrots are also goiterogenic but are mjuch less so if cooked. I think almonds were the only goiterogenic nut... But I do eat spinach, carrots and almonds very regularly for taste and other health benefits.

If you do have Hashimoto's are you being treated with T4 and possibly T3? How are your Free T4 and T3 labs? Since so many Hashimotos and celiac symptoms overlap, you'll want to make sure you are being treated for it. It could be at the root of your fatigue, hair loss and fog.

After being gluten-free for about 2 months my body went through some type of autoimmune attack that lasted about a month. I'm guessing it was from my undertreated thyroiditis but I am also looking into connective tissue AI diseases. I ran a slight fever (for me, that's almost hitting 98F LOL), ached in an arthritic like way, lost hair at a rate that my husband even noticed, and was so tired I became nervous to drive my children places. It's mostly gone now, after about a month and a half, but it was scarey while it happened so I understand some of your anxiety...

Give the diet time (it takes a while for improvements), treat your other problems (thyroid) and keep up your food and symptom log (good idea). Others advised me to be very descriptive when writing about symptoms. For example, don't just write "I'm tired" but mention how you fell asleep in the convenience store parking lot while waiting for your spouse to buy milk. KWIM? When my fingers hurt, I mention how I have a hard time with my toothbrush so I can remember how it impacted my life when I see the doctor again.

Best wishes. I hope you feel better soon.
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#14 june27

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Posted 22 October 2012 - 08:04 AM

Welcome!

It definitely is overwhelming to have to overhaul your diet like this. It takes some getting used to, but it does get easier with time.

If you don't want to give up all grains, and are feeling adventurous, there are a few gluten-free ones out there that are not mainstream, but are gaining in popularity:
1. buckwheat - I'm not a huge fan of this by itself, but in soup, stir-fry (with some sort of sauce), or with milk/fruits/maple syrup for breakfast, it works just fine.
2. amaranth - this one is a grain unlike no other. I usually cook it with onions to perk it up a bit, but might try adding other veggies next time as well. it sticks together more than rice or quinoa, so i am not sure how well it would work in a soup. It is not one of my staples, but it is great when I need to mix things up a bit.
3. sorghum - I have bought this, but haven't tried it yet. The one that I bought requires soaking ahead of time (like beans), and I am just not that organized

Another breakfast option if you want eggs is to make a frittata. you can put whatever meats/veggies you want to mix it up each time, and you can eat it on the run (either take to work to microwave, or can eat cold like a slice of pizza in the car).

I am also a big fan of home-made soup. You can cook it over the weekend, and have lunch made for the week. I do similar things with crock-pot dishes - make a big pot over the weekend and eat all week. It is kind of nice to not have to worry about cooking something every night of the week.

Good Luck! The first months are filled with ups and downs, but over time it does get better...
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#15 LadyCeliac

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Posted 22 October 2012 - 09:28 AM

To answer more of your questions you all asked:

Yes, I have been diagnosed with Hashimoto Thyroiditis. He isn't putting me on synthroid because he said my thyroid is actually functioning fine, I'm just not getting the benefit because the gluten is clogging it up.

At the time of my diagnosis, they took 16 vials of blood and tested for EVERYTHING, including heavy metals. I did have elevations of Copper and Selenium. My thyroid panels came back within range, but he feels gluten is blocking me from getting it.

I'm on a daily regimen of Vitamin D, daily vitamin, Calcium/Magnesium, Fish oil, B Complex time release and cinnamon bark--taking supplements 4x day.

My doctor will recheck all blood work in 2 months after I get the known gluten sources out and have had time for supplements to work.

I've noticed I'm lethargic through the day and can't sleep at night. Prior to diagnosis, I just felt tired all the time.

My doctor doesn't want me doing buckwheat, amaranth, or sorghums as he feels they can act like gluten and cause problems. Yeah...I know...the list dwindles as to what I can eat.
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