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pondy

Upper Gi/ribcage Pain

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Pondy,

I can highly recommend Metagenics UltraClear Sustain Medical Food ("Nutritional Support for the Management of Leaky Gut Syndrome"). My doctor prescribed it for me (but I believe anyone can buy it) four years ago, and it made me feel completely "normal" after only a short period of time. He had promised me, "I'll make you feel as though you don't even have celiac." And he was right! This stuff really works, and sometimes Metagenics has a booth at celiac conferences, so I think perhaps they've found their niche.

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Pondy,

I can highly recommend Metagenics UltraClear Sustain Medical Food ("Nutritional Support for the Management of Leaky Gut Syndrome"). My doctor prescribed it for me (but I believe anyone can buy it) four years ago, and it made me feel completely "normal" after only a short period of time. He had promised me, "I'll make you feel as though you don't even have celiac." And he was right! This stuff really works, and sometimes Metagenics has a booth at celiac conferences, so I think perhaps they've found their niche.

I have heard of this product. I think that is only available for purchase through a health care practitioner, however. It is a blend of vitamins, minerals and amino acids like L-glutamine. Contains:

Sodium

Potassium (as dipotassium phosphate)

Carbohydrate

Dietary Fiber

Protein

Vitamin A (as retinyl palmitate)

Vitamin A (as beta-carotene)

Vitamin C (as ascorbic acid)

Calcium (as calcium citrate and dicalcium phosphate)

Iron (as ferrous fumarate)

Vitamin D (as cholecalciferol)

Vitamin E (as d-alpha tocopheryl acetate)

Thiamin (as thiamin HCl)

Riboflavin

Niacin (as niacinamide)

Vitamin B6 (as pyridoxine hydrochloride)

Folate (as folic acid)

Vitamin B12 (as cyanocobalamin)

Biotin

Pantothenic Acid (as D-calcium pantothenate)

Phosphorus (as dipotassium phosphate and dicalcium phosphate)

Magnesium (as magnesium citrate)

Zinc (as zinc gluconate)

Copper (as copper gluconate)

Manganese

Chromium (as chromium polynicotinate††)

L-Glycine

L-Glutamine

L-Cysteine (as L-Cysteine HCl)

L-Lysine (as L-Lysine HCl)

L-Threonine

DL-Methionine

Blend of: Fructooligosaccharides and Inulin

Rice protein concentrate

Rice syrup solids

Rice flour

Olive oil

Medium chain triglycerides

I can see where it WOULD benefit a leaky gut and deficiencies!! :)

It is not a probiotic, though.

Just so you know. :)

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I'll try Culturelle ASAP - thanks!

My brother (a Chiropractor) just gave me something by Metagenics - it's called AdvaClear for detoxification. I haven't tried it yet. Forgot I had it, actually. Maybe I'll give that a go also.

Irish I laughed so hard at your poo comment - I'm feeling punchy from not enough sleep & that comment just made me giggle hysterically :)

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I'll try Culturelle ASAP - thanks!

My brother (a Chiropractor) just gave me something by Metagenics - it's called AdvaClear for detoxification. I haven't tried it yet. Forgot I had it, actually. Maybe I'll give that a go also.

Irish I laughed so hard at your poo comment - I'm feeling punchy from not enough sleep & that comment just made me giggle hysterically :)

um....No. DO NOT DETOX right now. Celiacs should not detox when their guts are inflamed!! (no offense to your brother) What ROSETAPPER suggested is nutritional support, not a detox.

Glad you laughed! Hope you feel better soon. :)

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Yes, IrishHeart, I should have made that clear....however, I try to recommend the Metagenics product whenever I can. It helped me tremendously....and I no longer need to take it for digestive health. It made me feel as "right as rain" within just a few weeks of using it, and I used it for at least a year before giving it up because of finances. However, my digestive health was just fine by then.

Pondy, perhaps your brother can get you the UltraClear Sustain, too!

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Given your rave review (as well as my brothers'), I will ask about getting the UltraClear Sustain as soon as things calm down a bit in my system. Thanks for the advice - and to you also, Irish, for the suggestion to wait till I'm not so inflamed all over.

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Given your rave review (as well as my brothers'), I will ask about getting the UltraClear Sustain as soon as things calm down a bit in my system. Thanks for the advice - and to you also, Irish, for the suggestion to wait till I'm not so inflamed all over.

Hold on, I think we're getting our signals crossed :)

The One ROSETAPPER suggests is GOOD to use: The Metagenics UltraClear Sustain Medical Food. You can still take the probiotics with it, too!

Ask him to EXCHANGE it for the DETOX one he gave you. I am sure he can!

The other one YOU mentioned --the one that DETOXES--- is the one I would not use. Ever!

Just IMHO. ;)

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Gottcha ;)

I understood, I'm just not as clear with words as I once was. Thanks again!

I had some trouble with that for a while, too---but it comes back! You're going to be okay! Hang in there, hunny!! In the meantime, check to see if you're getting CCed somehow....you have a housemate, don't you? :unsure:

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I do have a housemate, and she's a gluten eater. Careful as we are, there's bound to be some cc. She takes kindly to my gentle reminders to clean up, wash hands, etc... She's a sweetie, but accidents do happen.

Pretty much, I have the kitchen to myself a couple days a week - that's when I do my cooking for the week. I worry more about her bathroom products, our 2 cats & their food -

You know, the non-food sources of cc. I will keep brainstorming... when I'm not foggy brained, that is ;)

I know I'll be okay. My pain waxes and wanes - today it's manageable & that's alright for now 'cause I'm a patient person. :)

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I do have a housemate, and she's a gluten eater. Careful as we are, there's bound to be some cc. She takes kindly to my gentle reminders to clean up, wash hands, etc... She's a sweetie, but accidents do happen.

Pretty much, I have the kitchen to myself a couple days a week - that's when I do my cooking for the week. I worry more about her bathroom products, our 2 cats & their food -

You know, the non-food sources of cc. I will keep brainstorming... when I'm not foggy brained, that is ;)

I know I'll be okay. My pain waxes and wanes - today it's manageable & that's alright for now 'cause I'm a patient person. :)

I'm sure you do as best as you can with a GE in the house. :)

I would not worry about bathroom products or the cat food, unless you are eating them too? :lol:

My pain waxes and wanes, too--but I can report to you that for the first time since I can recall (1990-- something maybe?) I am in less pain than I was. I nearly cried writing that sentence.

It took me 11 months to feel as good as I do--which is still not that fantastic as I still have major pain issues to overcome.

But I will, dammit. I am a warrior princess :D

It was about 10 months for the mouth, throat, GERD, gut stuff and rib cage pain, etc. to stop. I am not the norm, I know, but I was UNDXed for so long.

Just stay off dairy, take the probiotics, drink water and eat simply. You're gonna get there too!

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Dairy causes me some pain also. So you might have found your culprit there. It doesn't cause me as many problems as it used to. but it never quite works either. Soy and nightshades are no good either. at least for me and some others here. There are plenty of foods we can develop intolerances too. Really anything at all can be a problem. So it helps to keep an open mind about the possibilities.

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BTW, hungry as I've been, I'm still not tempted by kiki's "savory salmon" ;)

No, huh? :lol: :lol: :lol: :lol:

Coincidentally, me neither..... :lol: :lol:

but even our cat eats grain free.....her coat is spectacular. Now, if only my hair would grow back in that luxurious. <_<

Hey, maybe Bella's "savory salmon" IS the answer..... :lol: :lol:

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Quick update...

Saw a new doctor - an Internist. She actually listened to me :) Felt so, so nice not to be dismissed!

She ran tons of labs - all the basics like TSH, vitamin levels, full metabolic, CBC, enzymes, inflammation markers and more...

All within normal limits - although, D3 is down about 6 points since last check.

Per my typical fogginess, I totally forgot to ask for follow up Ceiliac labs! Is this something most people have done??

My (possibly unfounded) fear is that I'm not healing or responding to a gluten-free diet. Why? The chronic left side upper GI pain, joint pain, feeling utterly inflamed all over - including my scalp, anxiety, recent change in bowel (from thin to tiny ribbon-like things), and general malaise.

Tuesday I see a new GI. I wonder, is a follow up endoscopy the norm?

Here's my plan - stay dairy free because there has been a slight improvement in the pain, try Prilosec in case it's acid stomach, and try like mad to keep myself preoccupied with things UNrelated to my health. ;)

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Quick update...

Saw a new doctor - an Internist. She actually listened to me :) Felt so, so nice not to be dismissed!

She ran tons of labs - all the basics like TSH, vitamin levels, full metabolic, CBC, enzymes, inflammation markers and more...

All within normal limits - although, D3 is down about 6 points since last check.

Per my typical fogginess, I totally forgot to ask for follow up Ceiliac labs! Is this something most people have done??

My (possibly unfounded) fear is that I'm not healing or responding to a gluten-free diet. Why? The chronic left side upper GI pain, joint pain, feeling utterly inflamed all over - including my scalp, anxiety, recent change in bowel (from thin to tiny ribbon-like things), and general malaise.

Tuesday I see a new GI. I wonder, is a follow up endoscopy the norm?

Here's my plan - stay dairy free because there has been a slight improvement in the pain, try Prilosec in case it's acid stomach, and try like mad to keep myself preoccupied with things UNrelated to my health. ;)

Good for you--a thorough doctor! :)

The GI doc will want a copy of those labs she just ran. Tell him what she did ----so they can coordinate your care.

Ask HIM to run the antibodies test and tell him all that is still going on.

He'll decide if you need another biopsy.

I'd type it all out, save it and print it off for every doc visit. That way, you won't forget what you want to ask. (this is what I do-- just a thought)

List all your supplements too.

I think the dairy free idea is good.

I hope you are on probiotics?

(Hon, not sure if this will make you feel better or worse, but those symptoms you have-- remained with me for a long time. Still have joint/nerve pain, and inflammation and I still get weird anxiety when CCed. Hate that. But, I am BETTER. It's almost a year for me. So, I do not think you are necessarily not responding to the gluten-free diet.)

Okay, keep us posted!!

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My (possibly unfounded) fear is that I'm not healing or responding to a gluten-free diet. Why? The chronic left side upper GI pain,

I had that left side pain... The Doc gave me HYOSCYAMINE SUL to relieve the spasms as he called them... I did figure out that onions & dairy set them off.. If I keep all dairy out of my diet(including what's in processed foods) I can eat onions without pain...

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Quitting dairy seems to be helping me somewhat - it's been a week & 1/2 or so. Onions I eat frequently - I never thought to suspect them before now.

My new doc thinks that I have IBS, but is open to exploring other causes - like it's more of a symptom than anything. My new GI is at the same clinic - one of her clinical 'interests' is IBS - hope she is open to running a celiac panel.

Thanks for the input! :)

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Quitting dairy seems to be helping me somewhat - it's been a week & 1/2 or so. Onions I eat frequently - I never thought to suspect them before now.

My new doc thinks that I have IBS, but is open to exploring other causes - like it's more of a symptom than anything. My new GI is at the same clinic - one of her clinical 'interests' is IBS - hope she is open to running a celiac panel.

Thanks for the input! :)

"IBS" is a syndrome. A collection of symptoms doctors lump together when they don't know what else to call it. :rolleyes:

The question I always asked was "yes, but WHY is my bowel irritable?" No one ever answered me. Well, I know now--it was GLUTEN.

I had "IBS" for over 12 years. They gave me Aciphex, Zantac, etc. (which was a mistake because celiacs --like me--often have too little stomach acid), told me to take Citrucel daily (which provided more fiber, but also plugged up the colon because I was not absorbing properly and I either had horrid C or raging D) and Carafate that "coats the esophagus" because I was in burning hell. Did nothing.

My ribs hurt so bad, they said I had chostochondritis. NONE of these things helped my "GERD" and "IBS". <_<

I started to realize, I can throw all the crap you want me to take down there, but if my GI tract is inflamed from gluten, it's not going to solve the problem.

Six months after I went gluten-free & DF and started to heal from the celiac, my "IBS" and GERD, which had made me suffer day and night for YEARS disappeared. :) I could not even swallow water without pain. :blink: Right now, I am drinking orange juice. I have not had this pleasure in 3 years. :)

I think you may just need more time. Watch for CC and stay off dairy. Take probiotics. Avoid acidic/irritating foods, like onion, coffee, chocolate, tomato, citrus. Just my humble opinion, based on my own ridiculously awful experience.

I forget, how long have you be gluten-free?

Best wishes. Keep us posted!!

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I've been gluten free since February 24th of this year. IMHO I ought to feel better by now.

Granted, I have only been dairy free for about 10 days - give or take... I plan to stick with that & probiotics.

Question: what exactly is a full celiac panel? I was just going to ask the GI to run tTGA and EMA.

I just feel crappy - on top of the GI stuff, now I am dealing with chills, intermittent piercing headaches, swollen glands, etc. for about a week. Ick. Probably just a virus or something, but still...

Okay - got the complaining out of my system. ;)

Thanks for listening.

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You're not complaining at all. You feel yucky. And It's okay to vent!

If it's any consolation, I am keeping you company. :rolleyes: I got glutened by a gluten-free "flourless chocolate cake"(on my first dinner out in a year post DX--for our anniversary!!!!) :angry: and I have been sick for a week. I just emailed the manager explaining that wheat flour free doesn't necessarily mean it is guaranteed gluten-free...where was it made? where'd you get the chocolate?? arrgh!! So, I feel like crap, too. Awful symptoms. UGH!

Your symptoms sound more like a flu bug now. (although oddly, I had symptoms like that when I was very sick on gluten pre-DX. Swollen glands, chills etc. ) But you've probably got something else going on.

Sorry, hon.

I have to wonder if you're not where you would like to be in the healing stage because of the dairy.

However, as I said, it took me a full 11 months before I said one day to my hubs, "This is the best I have felt in 5 years. If it weren't for the bone,joint,muscle,nerve pain, I'd be golden..." Then, 4 days later, we went out to eat and I got sick from CC. :blink:

Should have kept my trap shut. Jinxed myself. :lol:

The ‘Celiac Panel” includes:

Tissue transglutaminase antibody (tTG), IgA class is the primary test ordered to screen for celiac disease. If the anti-tTG, IgA or IgG test is positive, then the test can also be used to monitor a person with celiac disease and to help evaluate the effectiveness of treatment; antibody levels should fall when gluten is removed from the diet.

The endomysial antibody (EMA) test detects essentially the same thing as anti-tTG but is less frequently ordered.

Sometimes a total immunoglobulin A (IgA) test is ordered along with or following an anti-tTG test to detect IgA deficiency. If IgA deficiency is present, then an anti-tTG, IgG class may be ordered.

Sometimes an anti-gliadin antibody (AGA) test, and rarely an anti-reticulin antibody (ARA) test, may also be ordered.

An anti-DGP, IgA or IgG test may sometimes be ordered with or following an anti-tTG test, especially if anti-tTG is negative. If the anti-DGP test is positive, it may be used to monitor celiac disease.

An anti-F-Actin test may sometimes be ordered if a person has been diagnosed with celiac disease and a doctor wants to evaluate the severity of intestinal damage. If it is positive, it may be used as a monitoring tool.

Explained in detail:

http://labtestsonline.org/understanding/analytes/celiac-disease/tab/test

Hope you feel better soon, Pondy!

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IrishHeart, I just now noticed that you changed your avatar - see how observant I'm not? :blink: Anyway, with all you've been through - Warrior Princess is so very fitting!

I'm so sorry that you're sick too - and on your first night out in a long while! :( Stupid gluteny "gluten free" cake mix. :angry: Good for you for speaking up about it & holding 'em accountable!

I will send healing thoughts your way.

So, I think this bug or whatever it is might be dental related! I've got a sore mouth full of yuk. Tomorrow morning I see the Periodontist - full check up & maybe some antibiotics too !? :unsure: I do work in healthcare though, so I'm exposed to all sorts of infectious things. My lab work from a week ago shows a lowered WBC count. This could mean lots of things but surely I'm fighting off something. Who knows.

Thanks a million for the info on the celiac panels - I'll pass it on to my doctor on Tuesday.

I hope I have an 11th month reprieve like you did! Oh, to feel good again... You will. I will (eventually). I only hope that your cc exposure/glutening is short lived.

Take Care!

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I had/have off and on upper GI pain right where my GB would be if I still had it..which is right about where my hiatal hernia is. I notice that I have at time a lot of upper GI gas which i suspect it pushing near the hiatal hernia or pushing some acid through sphincter and into that area. A good many GI and others feel that a lot of gas is caused by too much carbohydrate fermentation and recommend lower carbs. Incidentally I feel much better when I am LC altho I so love my mountain dew (throw back, real sugar, no corn syrup)in the morning. I also notice a lot of upper gas/pain/pressure when drinking or eating something with a lot of fructose, such as most soft drinks.

But it looks like your post mentioned rib. I get chest pain near my left breast that is pinpointed with one finger and confirmed not cardiac. Seems to happen after a gluten or soy reaction, but also for the same reasons above.

The slow motility can let food stay in the stomach too long and cause weird issues for some including pressure that can be felt under the rib area.

This is what I hate about GI issues. They mimic so much and the symptoms are very vague.

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So, I think this bug or whatever it is might be dental related! I've got a sore mouth full of yuk. Tomorrow morning I see the Periodontist - full check up & maybe some antibiotics too !? :unsure: I do work in healthcare though, so I'm exposed to all sorts of infectious things. My lab work from a week ago shows a lowered WBC count. This could mean lots of things but surely I'm fighting off something. Who knows.

I hope I have an 11th month reprieve like you did! Oh, to feel good again... You will. I will (eventually). I only hope that your cc exposure/glutening is short lived.

Take Care!

Oh boy, something else we have in common. :rolleyes:

I hate to say it, but I never had perio issues until the Celiac triggered. <_< (yes, they are linked to it because of the Vit. C deficiency) I hope you are getting adequate Vit. C?

I have spent the last year in dentist offices. I HATE dentist offices. :angry: It started with an infection in the gum for one tooth only. Antibiotics will solve the problem, but be sure to repopulate your gut with PROBIOTICS, okay? Otherwise, you'll have an imbalance down there and that's not good.

I am a big pusher of probiotics because I was so desperately ill for so long and stool testing revealed I had NO detectable GOOD bacteria in my gut

whatsoever and the doctor said that was astonishing. It was--- because I HAD BEEN taking them for over a year trying to "treat myself"!! This was before I was DXed. But this is what happens in Celiac and this imbalance causes a whole host of problems.

You will get there, I am sure, but I really, really do know how you feel. It's frustrating and difficult to put up with so much pain while trying to heal your body. I can only offer you this---it DOES get better.

Yes, I am a warrior princess--but so are YOU! I hope you feel better soon.

Take care & keep me posted!

IH

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Pondy,

Weird to hear you mention your symptoms of rib pain, I have been gluten free nearly 4 months or so and have been not even 1% better, my biggest issue is a constant, and I mean constant deep gnawing ache in my a upper abdomen, and horrendous mid back and rib pain, most of mine is on the right side occasionally on the left, feels like somewhat kidney punched me hard, I walk around bent over holding my ribs as they feel bruised. Even the GI guy at Mayo looked at me like a whack job, saying he has never heard of such a thing and told me to go see a pain clinic doctor. I have had MRI of thoracic spine, cat scan of the chest and abdomen, and chest xray. scheduled tomorrow to get gallbladder out, as most of lovalizes to the right, who knows, at this point in time, I am willing to try anything as well as I just simply feel like dog poo! Constant pain is no way to go through life, prior to this summer I had not a single medical problem and was one of the healthiest 41 y/o guys I know, now I walk around like an old man, b%$@#in and complaining about all my aches and pains, unreal that they have no answers for this, I am praying that removing my gallbladder makes this better, and hope yours gets better too

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