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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can Not Lose! Just A Little Venting Among Friends...
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beachbirdie    43

I've been gluten free since May, with one stumble in August.

I've been pretty much primal for about 3 weeks now. I've been cutting calories, increasing exercise, and cannot lose an ounce! I piled on 15 pounds in three months while gluten loading for a blood test last winter/spring.

Three weeks ago I weighed in at 180 pounds, this morning I am still 180 pounds! I am 5' 6.5" tall.

I checked with online diet calculators and I'm averaging about 1200 calories a day.

I do not snack. I don't even use dressing on my salad! It is getting quite depressing.

Ugh. Thanks for listening. I just want to cry!

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luvrdeo    1

I've been gluten free since May, with one stumble in August.

I've been pretty much primal for about 3 weeks now. I've been cutting calories, increasing exercise, and cannot lose an ounce! I piled on 15 pounds in three months while gluten loading for a blood test last winter/spring.

Three weeks ago I weighed in at 180 pounds, this morning I am still 180 pounds! I am 5' 6.5" tall.

I checked with online diet calculators and I'm averaging about 1200 calories a day.

I do not snack. I don't even use dressing on my salad! It is getting quite depressing.

Ugh. Thanks for listening. I just want to cry!

I'm in the same boat! Gained close to 10 lbs in the last 6 weeks. Also on the primal diet, averaging 1200 calories of pure goodness a day.

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shadowicewolf    166

Ah, but the good thing is you are maintianing instead of gaining, that is a step right there.

Don't worry, it'll come off slowly.

I was at 180ish at 5'4'' at one point in time as well (before i had to go gluten free), i lost 40lbs in little over a month (NOT the way to do it) due to the vomiting and "D" I went through.

Now a days, i am just under 140 (YAY). It has taken a while to loose the lbs (i need to loose another 10 or so for my knees).

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Thyroid? It can make you sit on weight when you're doing everything right. Tsh isn't enough testing to see if its off.

And it took me at least a month of working out before I saw weight change. Then it would stagnate, then drop suddenly. Then i got that stomach bug and dropped 4-5 lbs. I've dropped another 1-2? My trainer said I maintained the weight loss because of the muscle I'd built.

We think I had muscle wasting, so as fat dropped muscle increased and weight seems to stay rather steady. My clothes are getting looser and I look very different.

It's a long road on this. I'm still afraid to start supplaments again. I think one of them bloats me up. Will be thrilling to figure out which one.

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beachbirdie    43

I'm in the same boat! Gained close to 10 lbs in the last 6 weeks. Also on the primal diet, averaging 1200 calories of pure goodness a day.

Pure Goodness! Cute! Yes, I really AM enjoying the primal eating. Just wish is worked for me like it worked for my daughter. The good thing is I feel better. Clearer mind, aches and pains diminished. I guess that's a good thing!

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beachbirdie    43

Ah, but the good thing is you are maintianing instead of gaining, that is a step right there.

Don't worry, it'll come off slowly.

I was at 180ish at 5'4'' at one point in time as well (before i had to go gluten free), i lost 40lbs in little over a month (NOT the way to do it) due to the vomiting and "D" I went through.

Now a days, i am just under 140 (YAY). It has taken a while to loose the lbs (i need to loose another 10 or so for my knees).

Thanks for the encouragement! It is so hard to be patient, but I really do FEEL better, and that counts for a lot. I'm hanging on to that while I wait for the pounds to budge!

Thyroid? It can make you sit on weight when you're doing everything right. Tsh isn't enough testing to see if its off.

And it took me at least a month of working out before I saw weight change. Then it would stagnate, then drop suddenly. Then i got that stomach bug and dropped 4-5 lbs. I've dropped another 1-2? My trainer said I maintained the weight loss because of the muscle I'd built.

We think I had muscle wasting, so as fat dropped muscle increased and weight seems to stay rather steady. My clothes are getting looser and I look very different.

It's a long road on this. I'm still afraid to start supplaments again. I think one of them bloats me up. Will be thrilling to figure out which one.

Not thyroid. That was one of the first things I thought of. Just had my tests done last week and they came in about as good as I've ever been. TSH is a little higher than I like at .5, but FT3/FT4 are smack in mid-range. Could be estrogen. I know I'm deficient in that. Wish I had time for a comprehensive visit to my doc, too busy trying to move my mom 600 miles {sigh}.

Nothing like a good stomach bug to take it off, eh? :wacko: Actually, it's amazing that those stayed off! I usually put them right back on!

Sounds like you are doing pretty well though, if you've stopped the muscle wasting!

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GottaSki    459

It does take time. I lost about 30 pounds during my first year gluten-free - most of that was not in the first six months. Your body is recovering from not absorbing nutrients. Once you body is able to absorb nutrients for some time it will regulate and pounds will come of &/or you will shape will change and you will feel lighter/clothes will fit looser.

One other thing that is counter-intuitive is you should be getting a higher amount of good fat while healing, not less. I'd suggest bumping your caloric intake up to 1500 per day by adding sources of good fat - avocado, nuts, coconut oil, etc. I was amazed at the difference in my energy level and results from exercise when I increased the good fat calories.

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I have always concentrated on healthy eating and not weight. But I know that weight is one way of gaging progress on the battle. I have used it for that. Yeah, concentrating on what else is progressing could be a good thing. Prayers for you BeachBirdie!

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Do they run reverse t3 on you?

I had mine run, after reading about t3 resistance. Mine is high, ratio is high. I fit a lot of the symptoms, especially the difficulty losing weight.

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kittty    22

You might try adding snacks back in to your diet, and eating smaller meals. Some people get a metabolism boost from eating smaller meals more frequently.

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JNBunnie1    164

My mother was down to about 800 calories a day, eating pretty much just chicken and salad, and was still gaining weight. I yelled at her and told her to eat butter, olive oil, red meat, whole plain yoghurt. Fruit! It worked. I'm guessing primal includes some healthy fatty meat? Have you been eating much of that?

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beachbirdie    43

Do they run reverse t3 on you?

I had mine run, after reading about t3 resistance. Mine is high, ratio is high. I fit a lot of the symptoms, especially the difficulty losing weight.

Actually, yes. My doc did a RT3 a while back, and though my ratio wasn't high enough for my doc to want to do anything about it, it was higher than the RT3 lady (whose name I can't think of) who runs an RT3 group recommends. I can't remember the numbers, but it WAS high enough to be problematic!

Have you done anything to work on that? Did you ever try the T3-only protocol? I'm wanting to do it, but need to uncomplicate some other stuff in my life first!

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beachbirdie    43

My mother was down to about 800 calories a day, eating pretty much just chicken and salad, and was still gaining weight. I yelled at her and told her to eat butter, olive oil, red meat, whole plain yoghurt. Fruit! It worked. I'm guessing primal includes some healthy fatty meat? Have you been eating much of that?

Yes, fatty meat is important! I do eat it. And wonderful, yummy coconut oil. And that heavenly fruit, avocados! My daughter keeps reminding me that if we cut our calories TOO severely, we actually send our body into starvation mode and the low calories hurt more than help!

Thank heaven you understood all that and were able to help your mom! I'm glad she was able to have some success!

I'm just going to hang in and know I'm doing the right thing. I remind myself that healing takes time. Months and years. I feel so much better, so it takes a lot of the discouragement away!

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beachbirdie    43

I have always concentrated on healthy eating and not weight. But I know that weight is one way of gaging progress on the battle. I have used it for that. Yeah, concentrating on what else is progressing could be a good thing. Prayers for you BeachBirdie!

Thank you! I agree, health is more important than "weight". Hard to remember that some times but I will work on reminding myself.

You might try adding snacks back in to your diet, and eating smaller meals. Some people get a metabolism boost from eating smaller meals more frequently.

Great idea, my primal-guide daughter agrees with your suggestion. Will try!

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beachbirdie    43

Ah, but the good thing is you are maintianing instead of gaining, that is a step right there.

Don't worry, it'll come off slowly.

I was at 180ish at 5'4'' at one point in time as well (before i had to go gluten free), i lost 40lbs in little over a month (NOT the way to do it) due to the vomiting and "D" I went through.

Now a days, i am just under 140 (YAY). It has taken a while to loose the lbs (i need to loose another 10 or so for my knees).

Thanks for the encouragement! I will hang on to it in my mental "book"! Thanks so much for sharing your story, it really helps to hear.

It does take time. I lost about 30 pounds during my first year gluten-free - most of that was not in the first six months. Your body is recovering from not absorbing nutrients. Once you body is able to absorb nutrients for some time it will regulate and pounds will come of &/or you will shape will change and you will feel lighter/clothes will fit looser.

One other thing that is counter-intuitive is you should be getting a higher amount of good fat while healing, not less. I'd suggest bumping your caloric intake up to 1500 per day by adding sources of good fat - avocado, nuts, coconut oil, etc. I was amazed at the difference in my energy level and results from exercise when I increased the good fat calories.

Thanks so much. I am working on the additions. Logically I know they will help.

Actually, you mention healing from not absorbing nutrients. I just had an interesting conversation with my doctor's office. I had my Vitamin D done a couple of weeks ago, it was very low and doc had me on 10,000 units of D3, then down to 5,000 units, and I was struggling to get the D level into normal range.

That was a year ago. I have not taken a D supplement since March of this year and was nervous about what the test would show. My level was HIGHER than last year after the first round of supplements! That tells me that going gluten-free in May HAS changed my body! I must have had damaged intestines even without the severe symptoms. I'm pumped by that result!

Good things are happening even if they are not outwardly obvious!

Thanks againd!

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Actually, yes. My doc did a RT3 a while back, and though my ratio wasn't high enough for my doc to want to do anything about it, it was higher than the RT3 lady (whose name I can't think of) who runs an RT3 group recommends. I can't remember the numbers, but it WAS high enough to be problematic!

Have you done anything to work on that? Did you ever try the T3-only protocol? I'm wanting to do it, but need to uncomplicate some other stuff in my life first!

Well, my rt3 ratio and level is high but my ND has been very disappointing regarding this. She calls it Wilson's Syndrome but keeps harping on my adrenals. I am of the philosophy (after reading about this stuff for years, and living through it) that the thyroid and adrenals work together (she agrees). Where we differ is that one can't improve one (in this case adrenals) to "normal" (at least for me) without incrementally working on the other. She wants to "cure my adrenals" and I think they are as "cured" as they're going to get until we address some thyroid issues (high rt3 that contributes to me not utilizing my thyroid meds properly).

So, this time after MUCH discussion I got her to prescribe Naturethroid (which I have done very well on in the past) instead of compounded t3/t4. I am taking almost half a dose (while I search for a new ND) in hopes that my rt3 levels will fall (since less t4 is going in). If this doesn't work I am asking for t3 only therapy (for the 3 or so months it takes to drop rt3).

Part of the problem is low d and iron (for me). My levels are not optimal to convert t4/t3... but after a YEAR of supplementing and being gluten-free my levels not rising dramatically. They are rising. Just not fast enough to relieve the possible thyroid issues.

So what do I do? Have thyroid issues for 2 years while my iron and d rise???

Anyway, shopping for a new ND.

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What sort of food are you eating? For me it's not totally the calories I eat but what I'm eating. I eat meat, vegies, a bit of fruit, fats and oils. About 1700- 1800 calories. If I ate low fat yoghurt, pasta, crackers, stuff like that, I would be starving and wouldn't last more than a few days on that calorie level.

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JNBunnie1    164

Yes, fatty meat is important! I do eat it. And wonderful, yummy coconut oil. And that heavenly fruit, avocados! My daughter keeps reminding me that if we cut our calories TOO severely, we actually send our body into starvation mode and the low calories hurt more than help!

Thank heaven you understood all that and were able to help your mom! I'm glad she was able to have some success!

I'm just going to hang in and know I'm doing the right thing. I remind myself that healing takes time. Months and years. I feel so much better, so it takes a lot of the discouragement away!

Well, yeah, my Mom's only issue was weight gain. We're 95% sure I got Celiac from my daddy, she's been virtually gluten free for a long time because of living with me and then my grandmother in FL, but shows no reactions when she does eat it, and has none of the symptoms. So her weight loss wasn't also all wrapped up in healing her system, it was just a metabolism correction that needed to happen. It was her starving herself, not Celiac starving her.

Isn't it nice that you feel so much better that you CAN worry about something else? I love that feeling! Like I need to start freaking working out, because I am used to being a very strong person and I'm so weak right now. Irritates me, I wanna be able to move my own furniture! And isn't it wonderful that I feel good enough to think that way?

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lil'chefy    2

I've been gluten free since May, with one stumble in August.

I've been pretty much primal for about 3 weeks now. I've been cutting calories, increasing exercise, and cannot lose an ounce! I piled on 15 pounds in three months while gluten loading for a blood test last winter/spring.

Three weeks ago I weighed in at 180 pounds, this morning I am still 180 pounds! I am 5' 6.5" tall.

I checked with online diet calculators and I'm averaging about 1200 calories a day.

I do not snack. I don't even use dressing on my salad! It is getting quite depressing.

Ugh. Thanks for listening. I just want to cry!

Same thing has been going on with me. You should have a saliva test done of your hormones (testosterone, estrogen, progesterone, and DHEA) I just had mine checked and they were really way off. Eating gluten for years, when you shouldn't throws off your body's chemistry. I am on compounded bio-identical hormone therapy now; we will see if it helps. By the way, is your weight gain primarily around your middle? If so, you can almost be certain that it is hormonal!

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beachbirdie    43

Same thing has been going on with me. You should have a saliva test done of your hormones (testosterone, estrogen, progesterone, and DHEA) I just had mine checked and they were really way off. Eating gluten for years, when you shouldn't throws off your body's chemistry. I am on compounded bio-identical hormone therapy now; we will see if it helps. By the way, is your weight gain primarily around your middle? If so, you can almost be certain that it is hormonal!

Thankfully my weight is spread out proportionally around my body. Not in the middle. But I'm going to ask my doc to check hormones, I'll bet I'm way off since I've been 'paused for 9 years.

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DavinaRN    5

As to the cutting calories to low, keep in mind everyone is different. When my metabolism was tested two yrs ago, my basal rate was 1400ish. Meaning if I stayed in bed my body would need that much to keep me alive and healthy. So to me 1200 would throw me into starvation even though all the calculators say it wouldn't.

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beachbirdie    43

As to the cutting calories to low, keep in mind everyone is different. When my metabolism was tested two yrs ago, my basal rate was 1400ish. Meaning if I stayed in bed my body would need that much to keep me alive and healthy. So to me 1200 would throw me into starvation even though all the calculators say it wouldn't.

How do they test your basal metabolism? I've heard people talk about it, but never heard how it's done!

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