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Celiacs With Gall Bladder Disease

mjtropical

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Marybet Newbie
Marybet
Posted

I was diagnosed 10/03. I am in to process of having my gall blatter tested due to ocasional pain. I'm having the blood test done today, ultra sound next week. I have experienced occasional pain and discomfort for years. Is this common?

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travelthomas Apprentice
travelthomas
Posted

Again, you might consider healing the problem instead of the quick way out. The pepermint does take a while, but cutting into the body seems kind of extreem, not to mention the scare tissue that never goes away. I personally like pepermint tea and have added it back into my diet.

Guest Nukapai
Guest Nukapai
Posted

Update: had an ultrasound and there are no gall stones to be seen.

Pain is getting worse every week (now constant level is definitely high and I have occasional "peak" days when the pain just gets so bad I want to lie down in a curled up ball and whimper).

Have lost more weight. I'm losing about a pound a day and in the last week, I had a bit of an accelerated leap in weight loss where I suddenly dropped 4 pounds in 48 hours.

Doctor is treating this as an "urgent" case now and has referred me to a specialist. Next step will probably be Endo.

I've had more blood tests and a urine test today.

Doc prescribed some strong painkillers today - the dose is two capsules, each of which contains 500mg of paracetamol + 30mg codeine. They knocked me into orbit! I'm now a legal druggie. :blink:

wildones Apprentice
wildones
Posted

To those of you having biliary (liver, pancreatic and/or bile duct problems)- please ask your doctor to order an MRCP. It is an MRI of the biliary tract that will give much more information than an ultrasound. Especially if you have very pale colored stools. My son has short gut (75% of his small intestines, his ileocecal valve and part of his colon have been removed) and had to have his galbladder removed right before he turned 5 yrs old :( .He had a HUGE stone stuck in his common bile duct -an emergency surgery was needed-and he had to hve his galbladder removed after that. He has since had intermittent pain like you have described and @ 5 months ago had his 1st MRCP. They discovered more stones stuck in his common bile duct. He had an ERCP (an endoscopic procedure) to remove them. He then 4 weeks later had more stones discovered (MRCP) and another ERCP. He then had another set of stones discovered and a stent put in his common bile duct. He will have the stent removed in @ a month and is being referred to an out of town pediatric liver specialist. He already sees an excellent liver specialist (hepatologist) and GI dr here. I have seen a hepatologist too and had a liver biopsy that showed damaged that was from an unknown cause (then undiagnosed celiac ?)

It is important to get the most informative diagnostic tests done in order to know how to treat biliary problems. It is not unfortunately just a simple diet change needed and is important to follow up on. Good luck to all of you in finding the right dr to figure out how to help.

Queen Serenity Newbie
Queen Serenity
Posted

Hi, all!

I have just had my gall bladder removed in August. However, my situation is different from all of yours. You see, I have been living with Celiac's for almost 10 years. I have never had any problems with this organ until the birth of my third child in May. Then, the stones appeared and I became very ill. It just feels like my body has been through many changes since being diagnosed, so long ago. I also have hypothyroidism, which also has stemmed from the Celiac's. As to how I feel now that my gall bladder is out, well, I can eat without any pain or heavy amounts of gas build up. I am hoping that this is the last of health related issues for a while. I hope that all of you feel better as well. Good luck to everyone.

Vicki :)

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  • Posts

    • SamAlvi
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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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