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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.

Upper Gi/ribcage Pain
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90 posts in this topic

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pondy    16

Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

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Whoops, I meant it is localized to my left side (not right)

Do you by any chance have a heart murmur?? Check any meds your taking, some can cause chest pain... I was thinking Gall Blader at first...

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pondy    16

I had a heart murmur as a child but I outgrew it. Sorry I forgot to mention that last month I had a HIDA Scan & my gallbladder has a normal ( slightly high) ejection fraction.

Thanks for responding!

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IrishHeart    1,634

I was ready to say gall bladder ...until you said left side...hmmm....

Have you pulled a muscle by any chance?

I had terrible rib cage pain before DX and costochondritis, but it has mostly resolved.

My GI did a GI series with barium and small bowel follow through right after DX to check me out. I am surprised your GI did not do this, considering you are reporting pain to him/her.

Whom are you seeing for this 2nd opinion??

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pondy    16

No pulled muscles... This pain has been ongoing since February - right before my diagnosis.

My GI did both upper and lower s scopes. He said I have lots of villi damage (from the Celiac) & something he called 'slow motility' ... In other words, chronic C.

I've wondered about C being related to the pain under my ribs, but alas, it's ever-present (even when my 'motlity' is regular).

I don't know.... Maybe I'm just slow to heal & need to be patient.

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pondy    16

Are you taking any Meds ??? Could be an A Fib issue...

Yes, MiraLax 1-2 times daily, Xanax for anxiety - gluten free per the Mfg.

AFib runs in the family too (mom has it). However, last month I wore a holted monitor for a mere 24 hours which showed "nothing significant".

So, AFib can feel like this? It doesn't seem heart related, but what the heck do I know? I thought maybe I was losing bone mass in my ribs or something - my doctor just looked at me like I was nuts!'

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FYI;Xanax may cause Chest Pain... One should get checked for A Fib too..

Seek medical attention right away if any of these SEVERE side effects occur when using Xanax:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); behavior changes; blurred vision; burning, numbness, or tingling; chest pain; confusion; dark urine; decreased coordination; decreased urination; fainting; fast or irregular heartbeat; hallucinations; loss of balance or muscle control; memory or attention problems; menstrual changes; muscle twitching; new or worsening mental or mood changes (eg, depression, irritability, anxiety; exaggerated feeling of wellbeing); overstimulation; red, swollen blistered, or peeling skin; severe or persistent dizziness, drowsiness, or light-headedness; shortness of breath or trouble breathing; suicidal thoughts or actions; tremor; trouble speaking; yellowing of the eyes or skin.

This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects. To report side effects to the appropriate

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AFib runs in the family too (mom has it). However, last month I wore a holted monitor for a mere 24 hours which showed "nothing significant".

So, AFib can feel like this? It doesn't seem heart related, but what the heck do I know? I thought maybe I was losing bone mass in my ribs or something - my doctor just looked at me like I was nuts!'

FYI, The holted monitor may not show up certain A Fib issues... It may take a stress test and an injected drug to get it to act up... Is your BP controled well & hold steady or does it go up when stressed or excited???

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rosetapper23    236

I have had that pain, too (at least, it sounds exactly like it). I suffered terribly from it for two years before I found out I had celiac. I do recall that it took more than a year to go away after adopting the gluten-free diet....and it's my first symptom when I get glutened. I usually haven't even finished the meal when the pain comes on.

Hopefully, the pain will subside in the next few months. I didn't even know that it was associated with celiac until it finally went away....and only returned after glutenings.

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pondy    16

FYI, The holted monitor may not show up certain A Fib issues... It may take a stress test and an injected drug to get it to act up... Is your BP controled well & hold steady or does it go up when stressed or excited???

I had a complete stress test back in December 2010 - due to an abnormal EKG. Stress test came back good/normal.

My BP is okay. The diastolic # has gone up over the past 7 months or so. When I'm stressed out or anxious my heart pounds and feels "fluttery" - that causes sudden bouts of fatigue & lightheadedness.

So, I had my potassium and sodium levels checked & both were normal. My current doctor won't order another stress test - she thinks everything is due to anxiety. I'm seeing a different Internist next month for a 2nd opinion.

As for the meds... I'm on a tiny dose (0.25 mg) - never thought to look into that as a cause, but I don't doubt it's possible. Thanks for bringing my attention to the warning lable!

It seems bizarre to me that this ribcage stuff could be heart related - just because it's constant, dull and achy - like bone pain. That being said, I certainly do have had heart issues that concern me & warrant further investigation.

Thank you for the input - I will explore the heart route with the new MD!

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pondy    16

I have had that pain, too (at least, it sounds exactly like it). I suffered terribly from it for two years before I found out I had celiac. I do recall that it took more than a year to go away after adopting the gluten-free diet....and it's my first symptom when I get glutened. I usually haven't even finished the meal when the pain comes on.

Hopefully, the pain will subside in the next few months. I didn't even know that it was associated with celiac until it finally went away....and only returned after glutenings.

I'm so glad yours went away after going gluten free!!

My stubborn body refuses to let it go at this point - even after 9 months gluten free...

Maybe something else is the cause for my pain - I'm willing to consider anything because

I'm totally at a loss here.

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SoyBoy    6

I take it from your high B12 and folate that you are supplementing. Is this correct? If so, I assume you were low at one point. If you were, could this possibly be nerve damage from low B12 and / or folate?

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ravenwoodglass    1,222

Are you eating soy? I ask because soy is a direct cause of that type of pain for me. The Xanax your taking is it name brand or generic (alprazolam)? My doctor called the maker with me sitting there and was told the name brand is not gluten free but the generic made by Sandoz is.

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pondy    16

I take it from your high B12 and folate that you are supplementing. Is this correct? If so, I assume you were low at one point. If you were, could this possibly be nerve damage from low B12 and / or folate?

Thanks for your thoughts!

I am supplementing with B12 and D3 - that's it. My doctor did not check my B12 & Folate levels until I was already supplementing for about a month. So, I'm not sure if I was low in that department - probably though.

Is it safe to assume that if it is nerve damage from many years of malabsorbtion, it will resolve itself if I keep supplementing & living gluten free? I'd imagine so, but... ?

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ravenwoodglass    1,222

Thanks for your thoughts!

I am supplementing with B12 and D3 - that's it. My doctor did not check my B12 & Folate levels until I was already supplementing for about a month. So, I'm not sure if I was low in that department - probably though.

Is it safe to assume that if it is nerve damage from many years of malabsorbtion, it will resolve itself if I keep supplementing & living gluten free? I'd imagine so, but... ?

I think this is unlikely to be nerve pain from low B12 levels. Usually that presents first as a tingling sort of sensation in the hands and feet and that can progress up the arms and legs. It can also cause a burning sensation or numbness in the extremeties.

In addition to the soy I mentioned in the other post have you also tried eliminating dairy, especially casien?

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I had a complete stress test back in December 2010 - due to an abnormal EKG. Stress test came back good/normal.

My BP is okay. The diastolic # has gone up over the past 7 months or so. When I'm stressed out or anxious my heart pounds and feels "fluttery" - that causes sudden bouts of fatigue & lightheadedness.

I had a normal EKG, but the stress test revealed something different... I was taking the wrong combination of BP meds and to much... I now take less med(different combination), feel better(no lower rib cage discomfort0, without the fatigue...

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pondy    16

I think this is unlikely to be nerve pain from low B12 levels. Usually that presents first as a tingling sort of sensation in the hands and feet and that can progress up the arms and legs. It can also cause a burning sensation or numbness in the extremeties.

In addition to the soy I mentioned in the other post have you also tried eliminating dairy, especially casien?

Soy is out - I eat mostly freshly prepared foods. When I get my cookie cravings, I buy Enjoy Life brand, which are allergen free.

I have cut way down on the dairy - I still use low lactose products like Parmesean cheese & Greek yogurt. Is dairy a common culprit or is it the lactose? Or, are they sort of one in the same? Please forgive my ignorance here....

Casien... Truthfully, I know little about it - so, I am not sure in what amounts I'm ingesting it.

I avoid corn. I eat lots of nightshades.

Looks like I should do an elimination diet for a bit.

Thanks for your response!

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IrishHeart    1,634

Okay, ROSETAPPER and RAVEN have suggested what I thought of this morning for you :) but I will add I also had the erratic and pounding heart, A-fib episodes, wore a holter monitor 3X, over the course of 4 years--and it was NOT my heart. Anxiety, horrible chest and rib cage pain. ALL FROM GLUTEN AND CELIAC. Every single bone and muscle, tissue and tendon hurts like hell. I cried every day from pain no one could explain to me.

It is getting better after 10 months gluten-free. I know it is disconcerting for you to have constant pain. I really do because I live with bone/joint/muscle/burning nerve pain 24/7.

Long unDXed Celiac can cause all of this pain. My doctor (and I trust THIS one :rolleyes: ) tells me repeatedly to be patient--that it will likely resolve in time. It is from INFLAMMATION and difficult as that is to hear, all the testing I have had done reveals nothing else going on.

He is NOT certain about the nerve pain resolving but I remain positive. I have beaten the odds already and will not quit.

Obviously, you should have your heart checked if you are concerned, hon. But it is often just the healing process. Several people on here told me it took YEARS for the pain to resolve, but it DID. :)

I'm with RAVEN --Take out dairy and see if it helps with the D and the pain. I suggest probiotics, if you are not already taking them.

Let us know what you find out if you have more testing done. Best wishes to you. Hang in there!

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IrishHeart    1,634

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant.

This may cause bloating, stomach cramps, diarrhea, etc. After the villi heal, most people are able to tolerate dairy foods again.

Casein is the protein in dairy. Some people acquire an intolerance to that.

Again, it may just be you are not healed enough to process dairy products.

Cutting way down is not the same as eliminating, as you know, so maybe a month off dairy COMPLETELY will stop the pain? Give it a try. :)

I have just begun adding dairy back in after 10 months and so far, so good. Before, it would have killed me.

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pondy    16

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant.

This may cause bloating, stomach cramps, diarrhea, etc. After the villi heal, most people are able to tolerate dairy foods again.

Casein is the protein in dairy. Some people acquire an intolerance to that.

Again, it may just be you are not healed enough to process dairy products.

Cutting way down is not the same as eliminating, as you know, so maybe a month off dairy COMPLETELY will stop the pain? Give it a try. :)

I have just begun adding dairy back in after 10 months and so far, so good. Before, it would have killed me.

You all have been so helpful :) I just want to say that I really appreciate you sharing all of your insight/knowledge with me!

Anyway, about 7 months ago I had one of those back scratch allergy tests - the doc said I'm not allergic to dairy.

I think things may have changed... By the way though, my GI issue is chronic C, not D. But we all react differently, right?

I will eliminate the dairy starting now!! It's worth a try - anything is! This pain is such a constant irritant!!!

I did just buy some lunch meat that says 'casein free/gluten free' - thanks Applegate Farms!

Like I said, soy is already out.

In December I'll get my second opinion & hopefully this new Internist is a bit more educated than my current one - she's in a teaching/research hospital so I have hope :rolleyes:

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You all have been so helpful :) I just want to say that I really appreciate you sharing all of your insight/knowledge with me!

Anyway, about 7 months ago I had one of those back scratch allergy tests - the doc said I'm not allergic to dairy.

My Allergist said that I didn't test positive to any dairy issues, but warned me that some people still have issues with it...

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IrishHeart    1,634

Anyway, about 7 months ago I had one of those back scratch allergy tests - the doc said I'm not allergic to dairy.

BUT a dairy allergy is NOT the same as lactose or casein intolerance!!

Back scratch allergy testing has nothing to do with what we are talking about here.

You may need to read about the differences between food allergies and the mechanisms of Celiac disease. Secondary lactose intolerance is quite common in celiac and is not diagnosed via allergy skin prick testing. As I stated above, it may resolve in time, but for now, it may be causing you grief.

Probiotics help resolve both D and C issues. Works wonders! A damaged celiac gut needs them.

Best wishes.

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ravenwoodglass    1,222

Anyway, about 7 months ago I had one of those back scratch allergy tests - the doc said I'm not allergic to dairy.

Having an allergy to something is not the same as an intolerance. An intolerance to dairy would not show up on a scratch test the same as gluten intolerance won't. Deleting dairy hopefully will help with the pain. It is good that you have a new doctor and if things don't improve hopefully he will have some ideas.

It can be hard to find a soy and casien free butter replacement. I used Ghee for a while which is clarified butter but found out that real butter is also usually tolerated and I had no problems with it. If you go with a nondairy milk don't use Rice Dream, it may say gluten free but is processed with barley and many of us do react to it.

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