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Am I Losing My Mind!?

ChristianGrey

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ChristianGrey Rookie
ChristianGrey
Posted

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?

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Kit Kellison Rookie
Kit Kellison
Posted

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 Rookie
harleygal726
Posted

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 Enthusiast
Bubba's Mom
Posted

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 Apprentice
mommyof4
Posted

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 Enthusiast
Bubba's Mom
Posted

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 Apprentice
mommyof4
Posted

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.

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

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?

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. 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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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