Am I Losing My Mind!?

[ChristianGrey]

Everyone here seems like family to me. Each and wveryone of us are warriors that have seen the worst - in our personal battles - we have been to hell and back; we have vouchers to prove it. Our strength is in numbers. With that said, I have a few inquires about our genetically inherited friend.:

1.) Has anyone had any issues with their gallbladder ie. gallstones or biliary dyskinesia - non-functioning gallbladder. If you've had the latter, did you symptoms eventually improve on a gluten-free diet or did said diagnosis call for a cholecystectomy (gallbladder removal)?

2.) I have been gluten-free for about 9 months; although I am still experiencing many of the original symptoms ie. intestinal pain - in lower upper left quadrant - and upper right quadrant pain. My appearance - facial features - looks horrible. Perhaps, I am being my own worst critic. Has anyone had facial - or any other body dysmorphia - such as appearing older/looser dryer skin?

[Kit Kellison]

Perhaps a thyroid check is in order...happens all the time with celiac patients; a large number of people have both.

Low thyroid can cause dryness, fatigue, poor digestion. You might want to take a look at your diet and see if you might be eating too much sugar and starch. Check out the paleo diet, maybe, to get rid of residual problems. Worked for me!

[harleygal726]

I have loose dry skin and I recently found out I am deficient in Copper, B2, CoQ10 and Oleaic Acid in addition to already diagnosed Vitamin D deficiency. My hair has been falling out and I started taking the additional supplements for my deficiencies along with Biotin which is great for skin and hair. You may have some vitamin deficiencies due to malabsorption. My doctors would not order very many vitamin tests, they would only order what is considered common for most Celiacs. I had to go to a Nutrition Preventative Medicine doctor who ordered a slew of tests for me.

[Bubba's Mom]

  On 8/30/2012 at 1:39 AM, ChristianGrey said:

Everyone here seems like family to me. Each and everyone of us are warriors that have seen the worst - in our personal battles - we have been to hell and back; we have vouchers to prove it. Our strength is in numbers. With that said, I have a few inquires about our genetically inherited friend.:

1.) Has anyone had any issues with their gallbladder ie. gallstones or biliary dyskinesia - non-functioning gallbladder. If you've had the latter, did you symptoms eventually improve on a gluten-free diet or did said diagnosis call for a cholecystectomy (gallbladder removal)?

2.) I have been gluten-free for about 9 months; although I am still experiencing many of the original symptoms ie. intestinal pain - in lower upper left quadrant - and upper right quadrant pain. My appearance - facial features - looks horrible. Perhaps, I am being my own worst critic. Has anyone had facial - or any other body dysmorphia - such as appearing older/looser dryer skin?

Gallbladder dyskenesia and pancreatic insufficiency can be caused by Celiac disease damage in the duodenum. A hormone (CCK) is produced there and is sent to the gallbladder and pancreas telling them to squeeze out the bile and digestive enzymes needed to break down and digest foods/fats.

I had severe damage when DXed and was having a lot of upper right quadrant pain along with tingling in my shoulder blade. I had nausea and bloating too. I was given a HIDA scan which measures gallbladder function. Mine was at 30%, the lower side of normal in December 2011. I was told to see a surgeon about having the gallbladder removed.

I didn't want to rush to a surgery and started looking up info on biliary dyskenesia. It can also be made worse by acid blocking meds, which I was on also. I decided to go off the med and see if I got any improvement.

My symptoms didn't improve, and I went to the Mayo clinic in Feb 2012 for additional tests. The Dr. there said he wouldn't advise gallbladder removal. He said to give myself time to heal and see if function returns to normal. I was put on an intestinal steroid (Entocort) and RX digestive enzymes and told to take probiotics. I've been on this treatment plan for 6 months now.

I had a lot of damage so I didn't expect immediate success. The digestive enzymes helped a lot with bloating and help make my foods break down so I can absorb the nutrients better. I wasn't given any time frame as to how long it will take to heal. That's something that is too unknown for them to say. I figure if it gets worse, or I become too sick or uncomfortable I can still have the GB removal..but if there's a chance of return to normal function I'll wait it out?

Your skin looking loose and dry..and looking older than your age can be from malabsorption..especially of fats. Before going on the digestive enzymes I looked like that too ( it was noted in my medical records by more than one Dr. that I appeared older than my age). I'm seeing quite a bit of improvement now.

I still have the GB pain..and still waiting.

Are you having GB symptoms? Have you had a HIDA scan? Do you take digestive enzymes/probiotics? They help a lot. My local GIs (I saw 2 of them) didn't suggest them to me. The Dr.s at Mayo Clinic were very thorough and helpful.

There's an article on the site here about a link to gallbladder problems and Celiac...

https://www.celiac.com/articles/119/1/Gall-Bladder-Disease-and-Celiac-Disease---By-Ronald-Hoggan/Page1.html

[mommyof4]

I also have had the gallbladder issue...HIDA scan showed mine functioning at 15%. My dr at Mayo put me on CREON...a digestive enzyme...& I take 1-2 with each meal. He also recommended I do not have the gallbladder removed at this time...he said the gallbladder isn't getting the signal to work due to damage in the beginning of small intestine & that it should heal with time. Remember, healing in the gut can take a long time in adults.

So, I also am waiting...that was in June. I was diagnosed with Celiac last Fall, so it has been about 10 months. My energy level definately improved once I started the digestive enzymes.

I would also recommmend a good probiotic...I like NOW 8 billion acidophilus & bifidus...I know there are a lot of different brands though. I guess you need to make sure it is the kind that needs to be refrigerated.

Hope a little more info helps. I know how frustrating this journey is at times. I keep telling my hubby that I have no problem eating gluten-free...I would just have a lot more motivation if I would feel back to 100% faster. A friend of mine reminds me that this major life change is also getting used to a "new" normal.

Good luck...I agree, this forum is a great resource & support group!

[Bubba's Mom]

  On 8/30/2012 at 10:22 PM, mommyof4 said:

I also have had the gallbladder issue...HIDA scan showed mine functioning at 15%. My dr at Mayo put me on CREON...a digestive enzyme...& I take 1-2 with each meal. He also recommended I do not have the gallbladder removed at this time...he said the gallbladder isn't getting the signal to work due to damage in the beginning of small intestine & that it should heal with time. Remember, healing in the gut can take a long time in adults.

So, I also am waiting...that was in June. I was diagnosed with Celiac last Fall, so it has been about 10 months. My energy level definately improved once I started the digestive enzymes.

I would also recommmend a good probiotic...I like NOW 8 billion acidophilus & bifidus...I know there are a lot of different brands though. I guess you need to make sure it is the kind that needs to be refrigerated.

Hope a little more info helps. I know how frustrating this journey is at times. I keep telling my hubby that I have no problem eating gluten-free...I would just have a lot more motivation if I would feel back to 100% faster. A friend of mine reminds me that this major life change is also getting used to a "new" normal.

Good luck...I agree, this forum is a great resource & support group!

I guess we both got the same advice/treatment plan from Mayo? I still have the pain sometimes..and tingling in my shoulder blade. I guess we just have to wait?

To the OP..have you had your gallbladder out? I thought I read something to that effect in another post? If you are still having symptoms you may need to take the digestive enzymes because of the CCK not being made..or sent, and probiotics to help balance your gut flora?

I've also been doing some reading on salicylate sensitivity and it looks like that *could* cause gallbladder type symptoms? Just another thing to consider...

[mommyof4]

  On 8/30/2012 at 10:36 PM, Bubba said:

I guess we both got the same advice/treatment plan from Mayo? I still have the pain sometimes..and tingling in my shoulder blade. I guess we just have to wait?

To the OP..have you had your gallbladder out? I thought I read something to that effect in another post? If you are still having symptoms you may need to take the digestive enzymes because of the CCK not being made..or sent, and probiotics to help balance your gut flora?

I've also been doing some reading on salicylate sensitivity and it looks like that *could* cause gallbladder type symptoms? Just another thing to consider...

Is Dr. Murray your dr too? Yes, I guess we wait. The digestive enzymes have increased my energy...I am eating pretty bland foods. I find really acidic foods like tomatoes do not settle well. I also stay away from a lot of red meat...any meat that takes a while to digest. I hope that changes when things heal...I really like a good steak! However, it seems chicken & fish settle best right now.

As far as the skin CG...I feel like I have aged in the last 10 months also (granted, I have been through a lot of tests, procedures, etc.) Let us know what you discover about that or if you come up with any good ideas to help.

[Bubba's Mom]

  On 8/31/2012 at 2:41 AM, mommyof4 said:

Is Dr. Murray your dr too? Yes, I guess we wait. The digestive enzymes have increased my energy...I am eating pretty bland foods. I find really acidic foods like tomatoes do not settle well. I also stay away from a lot of red meat...any meat that takes a while to digest. I hope that changes when things heal...I really like a good steak! However, it seems chicken & fish settle best right now.

As far as the skin CG...I feel like I have aged in the last 10 months also (granted, I have been through a lot of tests, procedures, etc.) Let us know what you discover about that or if you come up with any good ideas to help.

Yes..I saw Dr. Murry. I always mis-spell his name in case he does a google check of his name. I don't want my posts to show up. Makes me feel a bit freer to speak.

He agreed with my feelings about having the gallbladder removed. We have them for a reason..they aren't just an accesory. They serve a function. The one thing we didn't discuss was..if the gallbladder isn't squeezing out the bile..can it back up into the liver? Should some sort of monitoring be done to check liver status?

I'm having a bit of a setback. My diet was very bland with a lot of limits because of food intolerances that have popped up. Just recently I expanded a bit and had blueberries, tomato sauce with meatballs over spaghetti squash, fresh peaches, and homemade pickles. I'm now reacting badly to a LOT of things. I think I might be reacting to the salicylates in foods? Their effects are cumulative.

I lost potatoes in the last week too. Eating them gives me extreme pain in the knuckles of my hands.

When I was at Mayo the last time I had tests for loss of balance, and a few other nagging symptoms, including neurological. They never considered salicylate sensitivity even though I have quite a few of the symptoms that are known to be caused by it. (even my first biopsy report questioned if I was an Nsaids user due to the ulceration in the duodenum they saw-I don't use them.) I guess that's another thing that Dr.s haven't done much study on/don't know much about?

Soo..I've stripped my diet back down to low salicylates and I'm hoping for improvement. I don't have a GI locally and should probably find one, but at this point what would I say when I went in?