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Im In Tears. Please Someone Help. Celiacs?

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To the people of the celiac universe.

I know this is long but Please someone help me.

I am feeling very hopeless and I'm just throwing all my issues out there in hopes someone could possibly tell me if my symptoms resembles Celiacs.

Brief history -

* major ocd started around 3 (pulling out hair, obsessive hand washing, fear of germs)

as I got older - the ocd got worse (don't recall a traumatic experience)

*chicken skin - ever since I was a child - on arms legs and face (still have it til this day)

*major anxiety all my life

*poor circulation all my life

*bruise easily all my life

*sleeping problems majority of my life

* gallstones at age 16 - gallbladder removed

*appendicitis at age 21

* always constipated growing up

* developed an eating disorder at 16 to 26. I am now currently 27 and have been symptom free for a little over a whole year. I was a hardcore anorexic and then I would go right into full blown bulimic (back and forth for a decade) gaining and losing about 100 lbs each every time.

* I've always had tingling in my hands and feet. Went to Drs and no one ever figured it out.

* Always had edema (non pitting) in my legs

* Every time I get blood work done my liver enzymes are always elevated and I have no idea why.

* I've never abused diuretics but I have used water pills (back then) - lasix etc

* I've taken up bodybuilding to help me live a healthy lifestyle and it seems to me now that I am eating more consistently and being good to myself major problems are surfacing.

Daily I eat clean food ( a lot of veggies, lean proteins, yams, fruits - I eat every 2-3 hrs - 6 meals a day- the only thing I'm eating on a day to day basis with gluten is rolled oats and ff salad dressing. I take vitamins and digestive enzymes. I work out daily. I get enough fiber.

Once a week I have a treat meal and treat dessert (which obviously has gluten and dairy in them) I only have dairy also once a wk on my treat meal and dessert. just an ex: burger, fries and dessert cake and ice cream (all in moderation)

For the past 21 WEEKS I have been in hell. I've been through blood work - thryoid is okay and ultrasounds( they only saw gas in my stomach) and my Dr. (who is an idiot) could not find anything BLAMED IT ON my eating disorder when honestly I have been in recovery and have not relapsed and have been living moderately and healthy. He also told me it was from depression and I really doubt that it could make my stomach extended and all my other issues that I've been having.

These are my symptoms currently:

*distended hard hollow stomach EVERY DAY. I can see my ribs on the side but I seriously look pregnant. It is painful and it rarely goes away.

*It's a tearing pulsating feeling inside.

*Bulging veins behind calves and near pelvis area

*Loud foul smelling gas.

*I am not constipated NOR have diarrhea. I go once or twice every morning. My stools are very large long tubular and extremely bulky and from what I can see my veggies are not being digested. Looks like it could break apart very easily.

*Bright yellow urine (even though I drink a gallon to a gallon and have everyday)

*Headaches

*Nausea

*Anxiety

*Sadness

*Extreme fatigue

*Dizziness

*The second I put anything with gluten in my mouth I turn fire engine red. My face starts burning and it feels like a pins and needles feeling. To the point where my face feels paralyzed. Tingling in my eyes too. My chest also turns pinkish.

*My face gets puffy and I feel drugged almost.

* I break out in hives every week - the hives are on my chest, stomach, back, and but. They feel hot and sometimes they itch but they are not the ones that celiacs are shown to have.

*When my stomach does go down which is VERY RARE. i measured my stomach before going out to eat my treat meal and dessert. the next morning I measured my stomach again and it had expanded 6 inches!

*I have edema on my ankles and legs chest and arms - everyday.

I have tested negative for celiacs (blood- wise). My liver enzymes were once again elevated like always. I have an apptment with the GI may 14th. I'm very scared. I'm irritated. In tears on a daily basis. I feel hopeless. It's really triggering my eating disorder. I am seriously hanging on by a thread. I'm trying to win my pro card in bodybuilding and it's killing my dreams. Everyone wants to put me on antidepressants (and I've taken everything under the sun before and I'm not really for them) I can assure you this is NOT mental.

Oh and I even tried eating clean for 4 wks straight w/ no treat meals or desserts and still every single day my stomach is hard and painfully fully extened 5-7 inches.

Can you develop celiac's after a hardcore eating disorder or maybe I've always had this and never realized? Do I sound like I have it? Can anyone relate or give me some advice? I'm falling apart.

If you can't reply through this. my email address it Tiaramaterial@aol.com

Thank you all for taking the time out to read this.

Heather

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To the people of the celiac universe.

I know this is long but Please someone help me.

I am feeling very hopeless and I'm just throwing all my issues out there in hopes someone could possibly tell me if my symptoms resembles Celiacs.

Brief history -

* major ocd started around 3 (pulling out hair, obsessive hand washing, fear of germs)

as I got older - the ocd got worse (don't recall a traumatic experience)

*chicken skin - ever since I was a child - on arms legs and face (still have it til this day)

*major anxiety all my life

*poor circulation all my life

*bruise easily all my life

*sleeping problems majority of my life

* gallstones at age 16 - gallbladder removed

*appendicitis at age 21

* always constipated growing up

* developed an eating disorder at 16 to 26. I am now currently 27 and have been symptom free for a little over a whole year. I was a hardcore anorexic and then I would go right into full blown bulimic (back and forth for a decade) gaining and losing about 100 lbs each every time.

* I've always had tingling in my hands and feet. Went to Drs and no one ever figured it out.

* Always had edema (non pitting) in my legs

* Every time I get blood work done my liver enzymes are always elevated and I have no idea why.

* I've never abused diuretics but I have used water pills (back then) - lasix etc

* I've taken up bodybuilding to help me live a healthy lifestyle and it seems to me now that I am eating more consistently and being good to myself major problems are surfacing.

Daily I eat clean food ( a lot of veggies, lean proteins, yams, fruits - I eat every 2-3 hrs - 6 meals a day- the only thing I'm eating on a day to day basis with gluten is rolled oats and ff salad dressing. I take vitamins and digestive enzymes. I work out daily. I get enough fiber.

Once a week I have a treat meal and treat dessert (which obviously has gluten and dairy in them) I only have dairy also once a wk on my treat meal and dessert. just an ex: burger, fries and dessert cake and ice cream (all in moderation)

For the past 21 WEEKS I have been in hell. I've been through blood work - thryoid is okay and ultrasounds( they only saw gas in my stomach) and my Dr. (who is an idiot) could not find anything BLAMED IT ON my eating disorder when honestly I have been in recovery and have not relapsed and have been living moderately and healthy. He also told me it was from depression and I really doubt that it could make my stomach extended and all my other issues that I've been having.

These are my symptoms currently:

*distended hard hollow stomach EVERY DAY. I can see my ribs on the side but I seriously look pregnant. It is painful and it rarely goes away.

*It's a tearing pulsating feeling inside.

*Bulging veins behind calves and near pelvis area

*Loud foul smelling gas.

*I am not constipated NOR have diarrhea. I go once or twice every morning. My stools are very large long tubular and extremely bulky and from what I can see my veggies are not being digested. Looks like it could break apart very easily.

*Bright yellow urine (even though I drink a gallon to a gallon and have everyday)

*Headaches

*Nausea

*Anxiety

*Sadness

*Extreme fatigue

*Dizziness

*The second I put anything with gluten in my mouth I turn fire engine red. My face starts burning and it feels like a pins and needles feeling. To the point where my face feels paralyzed. Tingling in my eyes too. My chest also turns pinkish.

*My face gets puffy and I feel drugged almost.

* I break out in hives every week - the hives are on my chest, stomach, back, and but. They feel hot and sometimes they itch but they are not the ones that celiacs are shown to have.

*When my stomach does go down which is VERY RARE. i measured my stomach before going out to eat my treat meal and dessert. the next morning I measured my stomach again and it had expanded 6 inches!

*I have edema on my ankles and legs chest and arms - everyday.

I have tested negative for celiacs (blood- wise). My liver enzymes were once again elevated like always. I have an apptment with the GI may 14th. I'm very scared. I'm irritated. In tears on a daily basis. I feel hopeless. It's really triggering my eating disorder. I am seriously hanging on by a thread. I'm trying to win my pro card in bodybuilding and it's killing my dreams. Everyone wants to put me on antidepressants (and I've taken everything under the sun before and I'm not really for them) I can assure you this is NOT mental.

Oh and I even tried eating clean for 4 wks straight w/ no treat meals or desserts and still every single day my stomach is hard and painfully fully extened 5-7 inches.

Can you develop celiac's after a hardcore eating disorder or maybe I've always had this and never realized? Do I sound like I have it? Can anyone relate or give me some advice? I'm falling apart.

If you can't reply through this. my email address it Tiaramaterial@aol.com

Thank you all for taking the time out to read this.

Heather

I don't have Celiac, just gluten intolerance, but I have the same "pregnant belly". I have been off gluten for 6 months and I get it when I eat gluten, or sometimes dairy. Like, so big I can't button my pants (and I am normally skinny). I guess it is a reaction. I have not been tested for Celiac but I see many people on here are gluten intolerant even though they test negative for Celiac. It sounds like you weren't eating much gluten anyway, so maybe that is why you tested negative? People on here will probably tell you to try the diet. You will notice a difference if you cut out gluten for a month then reintroduce it. I also have a lot of anxiety and OCD tendencies that get worse when I eat gluten.

Don't panic. If this is what's wrong with you it is an easy fix.

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Hi, sounds like you're going through a lot. I think you may be taking on too much trying to figure this out yourself--that's what you pay the doctors for! Obviously you should be doing plenty of research, but until you've seen your GI, I'd put off making yourself feel like *you* have to figure out what's wrong. If he doesn't help you, then, sure, launch into full research mode.

My initial thoughts--you might consider switching primary doctors, if this one isn't treating you as he should, which it sounds like he's not.

Good step in seeing the GI. I'd also suggest seeing a OBGYN, as sometimes female problems can cause gastro problems.

Some of your symptoms are familiar, some aren't Obviously, you could have celiac plus something else. Your reaction to gluten almost seems like more of an allergic reaction, which is entirely possible.

Since glutening leads to symptoms up to two weeks for most people, just eating that one meal per week could keep you constantly glutened; however, you need to be eating gluten on a regular basis for the blood tests to work. If you were following this diet when you had the bloodwork, you can toss the bloodwork out--it's not valid. Also consider that you may have secondary allergies or intolerances, should as lactose intolerance or other food reactions that are keeping you sick.

Your GI should be able to do a lot. He'll be able to eliminate a lot of the possibilities. You should have bloodwork done for food allergies, certainly. Some things you should look into: the gluten challenge before having bloodwork/endoscopy, attempting a completely gluten free diet for several months, keeping a food journal to chart your reactions. Hope this helps!

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I feel so much compassion for you right now. I really understand your frustration and fear. Our symptoms, from the childhood OCD to the eating disorders sound very similar.

I've also been burned by doctors not taking my symptoms seriously.

I haven't been diagnosed with gluten intolerance or celiac- I've only just recently begun to make the connection- but you obviously know something isn't right.

The good news? There is so much info. out there now and so many support groups you really don't need to rely only on misinformed doctors.

Of course, give your GI a shot. Hopefully he will be able to diagnose your problem, but also know you have a world of information at your fingertips.

As a side note, make sure the tests they used for your thyroid panel included the FREE T3 and FREE T4. It's important they test these in addition to the TSH, T4 and T3.

Those two tests made all the difference in how my thyroid disease was treated and thyroid disease, like celiac disease, is grossly under diagnosed because of a stubborn and narrow minded refusal of doctors to consider any testing outside of the TSH.

Hang on. You'll figure it all out and, hopefully soon, feel better.

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(((Hugs))) first off!

2nd - I believe I would switch docs at this point.

also, have you had allergy testing?

Could you maybe have fructose malabsorption? That can also give you the distended stomach and problems you are listing... they test that with a hydrogen breath test.

I hope you get some answers. First thing though - I would switch docs!

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Hi Heather,

You can develop celiac at any time of life. There is no real understanding of exactly how celiac is kicked off in some people and not others. Theories, but nothing proven.

Eating "clean" food is good. But gluten can be hard to eliminate when eating processed foods. It is sometimes present in foods made or packaged on shared equipment, even when the ingredients don't list gluten. That's called cross-contamination. Vitamins and medicines can contain gluten also. Oats are ok for most celiacs but there are some who do react to them.

Guess what I am saying boils down to yes, you could have celiac. If you are eating mostly gluten-free then blood tests most likely are not going to show anything. You may be better off just starting the gluten-free diet and seeing how things go after a solid 3 months of whole foods eating. You need to be 100% clean of gluten to see a good result.

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Hi Heather,

You can develop celiac at any time of life. There is no real understanding of exactly how celiac is kicked off in some people and not others. Theories, but nothing proven.

Eating "clean" food is good. But gluten can be hard to eliminate when eating processed foods. It is sometimes present in foods made or packaged on shared equipment, even when the ingredients don't list gluten. That's called cross-contamination. Vitamins and medicines can contain gluten also. Oats are ok for most celiacs but there are some who do react to them.

Guess what I am saying boils down to yes, you could have celiac. If you are eating mostly gluten-free then blood tests most likely are not going to show anything. You may be better off just starting the gluten-free diet and seeing how things go after a solid 3 months of whole foods eating. You need to be 100% clean of gluten to see a good result.

I cannot eat oats! I have to lay down and sleep immediately after I eat them. Sugar is not good either! Don't deswpair. This blog is the BOMB!

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Thank you for responding. I'm glad things cleared up for you. I am counting down the days to the GI...uhhh

My pregnant stomach is physically emotionally mentally killing me. My plan of attack is if the GI cannot figure it out. Or even if I test negative w/ all tests..I will just do my own thing and pray everything goes away.

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Yeah I'd probably die if I ate gluten everyday. I was using the treat meal dessert to keep me on track with my eating disorder and a way to boost metabolism. I am totally done with my primary care dr. have Gi In 3 wks...praying they figure it out...thank you for all your thoughts and kind words

Heather

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For Celiac testing you need to be consuming gluten. :(

A gluten challenge (intentionally eating gluten for enough damage to show in blood tests and biopsy) can be dangerous.

The fact you had your gall bladder taken out at such age is (in my opinion) a red flag for celiac/gluten intolerance. Along with your list of symptoms.

You should be taking some sublingual vitamin B12 supplements.

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I found everything said here should help you out a great deal. I'm surprised, nobody mentioned EnteroLab with their stool tests. www.enterolab.com

Stef

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I found everything said here should help you out a great deal. I'm surprised, nobody mentioned EnteroLab with their stool tests. www.enterolab.com

Stef

Good point. Enterolab can test for antibodies even if you are gluten light or gluten free for a short time. You may want to check them out. They do not diagnose celiac but they can tell you if you are forming antibodies to gluten which would mean your body doesn't want it.

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very interesting. thank you so much for your advice. I will stop at nothing to get this settled!

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Thank you. I'm putting that on my checklist. this board is amazing. i was reading your celiac history and i cannot believe they misdiagnosed you for that long! It makes me think with all my past issues and current ones that this whole time ive had a gluten intolerance. grrrr

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Thank you for your thoughts. It dawned on me that maybe everything - my past poor physical health and mental health - could be in fact connected to celiacs. I am counting down the days to the GI faithfully

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I'm so glad, we could give you some hope. I hope you are doing better in no time. Of course, we are always here for you. So feel free to pop any questions or like many of us, just stay, because it's fun to talk to people who have the same problem. You don't feel quite that alone in our big glutenized world and still just a few rare sufferers (compared to the non-sufferers). Maybe, over time, when people get to know you and you them, you might even be able to go out glutenfree. That's what I'm doing currently and it's a bunch of fun... spread the awareness everyone!!!

Happy living and may God bless you all!

Stef

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I'm so sorry you are sick and feeling bad. Obviously you're sensitive to gluten, since you react so strongly to eating it. Someone else mentioned fructose malabsorption as well and I had the same thought. Your bloating, gassiness, and reaction to sweets are what makes me wonder.

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Hi, I hope you are still monitoring your thread here. I hope you are taking a positive attitude and have found a solution.

I have been gluten free for 5 weeks. I certainly would never consider anything that made me sick a 'treat'. Instead I found some gluten free cookies and those are my treats. I read somewhere 1/8 teaspoon of gluten can cause problems like leisons growing again , they were not clear what would happen --I'm guessing.

I do not consider this diet one that I can cheat on unless I am diagnosed and found just SENSITIVE and not Celiac. Who knows maybe that doesn't work.

To get diagnosed I will have to consume gluten so I have been making a list of what I will eat. Cakes and waffles and cookies I make and the list goes on and on. I expect to get sicker'n a dog. But afterwards I will never be able to eat them again.

Although I coped before I realise now how many more of my problems are due to gluten. If I revert to the past symptoms I can easily handle them, as I have for 65 years. But if worse I'll have to ask for pain pills. The 100 fold increase in colon cancer is enough to keep me from eating gluten. I hope my osteoporosisand Lactose intolerance goes away and that I don't get the family curse of diabetes which is the cause of death for some members.

gailc

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I forgot to say a couple years ago I lost 22 pounds in less than a month when I reduced my salt intake, I went quite low but never lower than 500 mg which is what I found on the internet. I lost 4" off my abdomin, not tape measure style but it used to stick out 4" more. I went form 'chunky' to a gut like a model except for the flabby skin. It was water or the term I like to use 'inflamation'.

Had a bunch of other symptoms disappear too, like edema, they never came back.

gailc

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I don't think Stef has been around here much in the last year Gail; that is a pretty old post.

I am not sure why you are considering glutening yourself for 2-3 months in order to try to get someone to tell you not to eat gluten when you know you shouldn't eat it anyway :huh: It really doesn't make much difference whether it is celiac or gluten intolerance at 65 years of age - you just need to get off the gluten before something bad happens. :unsure: If you do go back on you will definitely get sicker than a dog, probably so sick that you will not be able to make it through the challenge, like so many before you.. If you already have osteoporosis and lactose intolerance, and are at risk for diabetes, one would hope that that would be a sufficient message :rolleyes:

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Material Girl, if you are reading this, dont go by someone telling you your thyroid is fine. If you see another thread of mine you'll see that thyroid problems are often misdiagnosed as well. Find yourself a great integrated health doc that will look at you as a whole picture. There is something called a "good doc" list that you can find who will help you get to the bottom of this. I hope you are finding relief.

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I don't think Stef has been around here much in the last year Gail; that is a pretty old post.

I am not sure why you are considering glutening yourself for 2-3 months in order to try to get someone to tell you not to eat gluten when you know you shouldn't eat it anyway :huh: It really doesn't make much difference whether it is celiac or gluten intolerance at 65 years of age - you just need to get off the gluten before something bad happens. :unsure: If you do go back on you will definitely get sicker than a dog, probably so sick that you will not be able to make it through the challenge, like so many before you.. If you already have osteoporosis and lactose intolerance, and are at risk for diabetes, one would hope that that would be a sufficient message :rolleyes:

I'm thinking you are right but I would still like to know if cancer screenings should be stepped up. I hate being knocked out anymore than necessary.

gailc.

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Presumably you had a screening colonoscopy at around 50?? If there were no polyps at that time, then I would just do what is normal for any person. Once you quit eating gluten your risk starts to drop quite quickly I believe, although as with smoking it can never go back to completely normal. I would just concentrate on getting as healthy as you can and not be overly anxious about the risks of cancer while at the same time being prudent. Due to genetics I live with the threat of breast and ovarian cancer over me constantly, but I barely think about it. However, I never miss a mammogram and have had my ovaries removed :rolleyes: I had a colonoscopy at 50 which was clean, and will never have another :ph34r:

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