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Thinking I Might Have Celiac


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#1 TracyFL

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Posted 03 March 2013 - 08:58 AM

Hello:)

 

I am a type 2 Diabetic on medication and diet/exercise regimen.  Recently I started feeling nauseous and even vomited a few times, always after eating something with gluten in it.I have also been having a hard time controlling my blood sugar and have been craving bad things like Italian bread, cookies, and cake, EEEEK!!   For the past 8 years or so, I have had terrible bloating, gas, alternating diahrreah and constipation with stomach cramping. Also joint pain, fatigue, foggy brain. I had several surgeries during that time and feel that might have triggered the Celiac, and that in turn may have contributed to the Diabetes. So I started thinking after seeing something about Celiac on TV (I KNOW, sounds hypochondriac-ish, lol) that I would eliminate gluten from my diet.  It's been 3 days only, and I already feel much better and hope to improve every day until I feel human again!

 

Anyway, I haven't been formally diagnosed and since I don't have health insurance, doubt I'll have the funds to do so.  I already spend a lot of money on meds and supplements (all gluten-free, I checked) for the diabetes and other issues.  Is it completely necessary to obtain a formal diagnosis, if I am showing marked improvement with diet? There really doesn't seem to be any other medical treatment for Celiac besides eliminating Gluten.  Any advice for a newbie?


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#2 ForTrent9

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Posted 03 March 2013 - 09:09 AM

Hello:)

 

I am a type 2 Diabetic on medication and diet/exercise regimen.  Recently I started feeling nauseous and even vomited a few times, always after eating something with gluten in it.I have also been having a hard time controlling my blood sugar and have been craving bad things like Italian bread, cookies, and cake, EEEEK!!   For the past 8 years or so, I have had terrible bloating, gas, alternating diahrreah and constipation with stomach cramping. Also joint pain, fatigue, foggy brain. I had several surgeries during that time and feel that might have triggered the Celiac, and that in turn may have contributed to the Diabetes. So I started thinking after seeing something about Celiac on TV (I KNOW, sounds hypochondriac-ish, lol) that I would eliminate gluten from my diet.  It's been 3 days only, and I already feel much better and hope to improve every day until I feel human again!

 

Anyway, I haven't been formally diagnosed and since I don't have health insurance, doubt I'll have the funds to do so.  I already spend a lot of money on meds and supplements (all gluten-free, I checked) for the diabetes and other issues.  Is it completely necessary to obtain a formal diagnosis, if I am showing marked improvement with diet? There really doesn't seem to be any other medical treatment for Celiac besides eliminating Gluten.  Any advice for a newbie?

Hi, we are new to this too! My son and I>

I dont think you need a formal diagnosis, or an accurate one, I think if you eliminate the gluten, Totally gluten free, and you feel better, Terrific! It is worth a shot.

God Bless and good luck:)


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#3 kareng

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Posted 03 March 2013 - 09:20 AM

Here are some reasons to have an actual Celiac diagnosis:

Kids in school - they don't have to be careful or excuse kids from baking, etc without an official diagnosis

College dorms- most colleges require students to stay in the dorm and pay for a meal plan the first year of college. Without an official diagnosis, they do not have to give you gluten-free food or make other arrangements

Adults- hospitals, nursing homes, doctors, do not have to provide gluten-free food or any follow- up care

Going to sporting events, theme parks, etc - with a diagnosis, I can get a note allowing me to bring in safe food. This is important if I have to be there all day and want to eat more than a Coke and a bag of potato chips.

Testing your kids- if you have a diagnosis of Celiac, your kids should be tested every few years. Insurance ( when you have it in the future) will pay for this if the parent has an official diagnosis.
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#4 nvsmom

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Posted 03 March 2013 - 09:24 AM

Welcome to the board.  :)

 

In my opinion, you don't need an official diagnosis but many (if not most) celiacs find it helpful to have a diagnosis because it re-enforces the fact that you must stay 100% gluten-free. It can be difficult for some to stay gluten-free when they eat out, are visiting, or feeling down or unwell if they do not have a definitive diagnosis to back them up.

 

So basically you do not need a diagnosis but it can be helpful.

 

Many celiacs have nutritional deficiencies which you might want to check into. We are often low in calcium, iron and ferritin, B12, D, and potassium. With an autoimmune disorder, we are now predisposed to be more likely to develop more autoimmune disorders than the average person. You might want to keep an eye on your symptoms and if they are not helped by going gluten-free for a few months (at least 3 - more is better), then you might want to check other AI disorders; thyroiditis is the most common.

 

As you probably know, wheat flours (as well as some of the other flours - starches especially) convert to glucose in your body extremely fast. In fact a piece of whole wheat bread will raise your blood sugar faster than eating straight table sugar.  Gluten-free baking that is sold in stores (like cookies, brownies, muffins, and breads) are even higher in sugars than typical wheat filled baking, and if starches are used that will affect your blood sugar even more. As a diabetic, I would urge you to avoid gluten-free baked goods as much as possible and try to stick with whole foods. If you do use baked goods, bake your own, cut down the sugars and try to use coconut and almond meal more than the other gluten-free flours out there.

 

Best wishes. I hope you feel well soon.  :)


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#5 TracyFL

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Posted 03 March 2013 - 10:07 AM

Thank you everyone.  I will for sure be reading labels very very closely and doing some baking experiments. I usually eat low-carb pitas and lavash bread and that doesn't spike my blood sugar too much, only lately I've been running higher.  Last couple of days is an improvement and I hope to see more normal numbers soon.  I did eat a gluten free bagel this morning (half) with my breakfast and only went up to 137, so that's good, but I would like to find more nutritous, whole grain fare and will be careful. 

 

I will speak with my doctor at my next appointment and see what labs we can do that won't break the bank.  I am due for a check-up very soon, and my doc is pretty good about keeping my costs down since I have no insurance and my family makes just enough money that I don't qualify for any assistance.

 

I think that this forum is going to be very valuable to me in my journey and I thank everyone for being here:) Lots of good tips here:D


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#6 Celiac Mindwarp

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Posted 03 March 2013 - 10:16 AM

One other point is that if you do decide you want a diagnosis, you need to be eating gluten for the blood tests and biopsy. It can be mighty hard to go back on for testing once your body has had a go at being gluten free.

I think my line is to get tested if you can,for the reasons kareng mentions, but whatever the results try gluten-free.

Good luck and welcome
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 TracyFL

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Posted 03 March 2013 - 10:33 AM

One other point is that if you do decide you want a diagnosis, you need to be eating gluten for the blood tests and biopsy. It can be mighty hard to go back on for testing once your body has had a go at being gluten free.

I think my line is to get tested if you can,for the reasons kareng mentions, but whatever the results try gluten-free.

Good luck and welcome

that scares me, going back to eating what was essentially causing all my misery.  How long do you think I would have to do that before any tests? Just a guesstimate;)  If I am going to pay for these tests, I want an accurate result. 

 

Thanks so much for your time and the warm welcome!


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#8 kareng

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Posted 03 March 2013 - 10:44 AM

that scares me, going back to eating what was essentially causing all my misery.  How long do you think I would have to do that before any tests? Just a guesstimate;)  If I am going to pay for these tests, I want an accurate result. 
 
Thanks so much for your time and the warm welcome!



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#9 1desperateladysaved

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Posted 03 March 2013 - 10:55 AM

You might try looking up some grain free muffin recipes.  I use nut flours and I think they turn out scrumptious.  Maybe that would help satisfy the cravings.

 

I hope you continue to feel well and that your diet will help with the diabetes also.

 

Diana


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#10 TracyFL

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Posted 03 March 2013 - 02:02 PM

You might try looking up some grain free muffin recipes.  I use nut flours and I think they turn out scrumptious.  Maybe that would help satisfy the cravings.

 

I hope you continue to feel well and that your diet will help with the diabetes also.

 

Diana

Thank you!  Great idea:)  It's just lately the cravings got really bad, I usually don't have much trouble.  Since I figured out that gluten is probably my enemy, though, I don't really want that stuff as much, lol.  Hopefully things willl get better and better now and with this board's help, I'm sure it won't be too bad.


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#11 Celiac Mindwarp

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Posted 03 March 2013 - 05:53 PM

6 to 12 weeks generally recommended, though advice varies.

If you want to test and can find a way to afford it, if you went straight back on gluten now , stay on until testing is done, and get tested as soon as possible, just 3 days gluten-free should be ok.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#12 TracyFL

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Posted 04 March 2013 - 06:35 AM

6 to 12 weeks generally recommended, though advice varies.

If you want to test and can find a way to afford it, if you went straight back on gluten now , stay on until testing is done, and get tested as soon as possible, just 3 days gluten-free should be ok.

I don't know if I can go back. I took two sips of a beer last night, totally forgetting about the gluten thing, and feel so sick today. D, headache, fatigue, the whole nine yards. It really sucks that you have to purposely make yourself ill to get a diagnosis, you would think that they could find a different method or something.  Since I am extremely broke for the next year or so (daughter is going to college in August, there goes my baby and my money LOL) then I will stick to the gluten free lifestyle for now. It won't hurt and certainly does help:)


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#13 Celiac Mindwarp

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Posted 04 March 2013 - 12:01 PM

I don't blame you, my challenge was horrible.

Good luck with the gluten-free diet :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#14 gatita

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Posted 04 March 2013 - 01:02 PM

Some of the new research is saying only two weeks on gluten is needed for the challenge.

 

We tried that in my case, thinking it was tolerable, but I only lasted 2 days before my doc called it off. He did the biopsy anyway. He said sometimes if you're still having symptoms they can still find damage (if they're really good at the lab) even after being gluten-free for months, or almost a year in my case. We shall see, don't have the results yet.

 

I hope you get the answers you need. Sometimes being unable to tolerate the gluten challenge is the clearest answer you can get, that's how my doc feels anyway! He isn't calling it celiac at this point, but gluten intolerance. In the end, we all have to remember the treatment is the same!

 

Also, even if what you have isn't officially called celiac, gluten intolerance certainly can run in families (it does in mine), so I believe it's important to keep an eye on your relatives as well. (My brother is going gluten-free after coming down with severe idiopathic ataxia.)


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