Newbie here...looking for help

[mom2zonabby]

Hi everyone! I'm new to this board; however, not new to this problem. I'm a 43 year old mom of 2. It's been a long road where I've seen about 4 gi's in the last 5 years. I first knew something was wrong when out of nowhere the urge to came kicked in and I didn't make it in time. A fluke I thought, but then it happened again. The GI tested my poop and was adamant a scope wasn't necessary. That test showed elevated pancreatic enzymes and put me on creon. I also had elevated liver enzymes. Sent me to my gp. She retested and all came back fine. I went to a new GI who performed a colonoscopy and endo scope. She dx with LC and possible celiac. I've tested negative for each blood test I've done, and my scope showed some blunting. When dx, my gi felt best to manage the celiac with diet, and treat lc with pepto, but wasn't specific in how. Went gf for a year with continuous issues. Main problem, urgency and inability to get to the restroom in time. Went for another opinion - bottom line, I just had another scope, and waiting for those results; however, appears to be similar to the last. This GI is comparing to my old slides. To make matters worse, I had my gallbladder removed over 10 years ago, and still suffer from the same type of pain that no one can explain. I take Omeprazole for that, but not consistently. I've had episodes so bad I've landed in the ER to help the pain stop which is basically done with a super potent antacid. I need help! I'm so worried this dr will come back with the same info the last gi said, and not really give me much of a treatment plan. I work from home 2 days a week, and sometimes more just so I'm not worried about being in public. yep - i've had incidents at work. I can't go to the store, or to a restaurant, or to, well ANYWHERE, without knowing first, where the restroom is. I can't live like this! I tried monitoring my diet by only eating rice and chicken on days I need to go to work, but with little nutrition in that, it's tough to stick to. I'm foggy, and tired and unmotivated. While previously tested as malnutrition on the stool sample, these doctors have checked my blood levels and say everything is "normal". I hate when they say that! I want them to find something wrong that they can treat! Otherwise, I continue with these issues and as we all know, no one understand what we go through unless they go through it. This just has me feeling so hopeless. Anyway, looking forward to anyone's feedback, success stories, suggestions. Thanks for listening!

[tex]

Hi,

Welcome to the group. You sound like me a couple of years after my symptoms became severe. That's exactly what I said — I can't live like this! So I started keeping a food/reaction journal, hoping to figure out what was causing the problems. Lo and behold it turned out to be a bunch of foods.

Selecting and sticking to a recovery diet is not easy but it's the only game in town. Medications provide only temporary relief, and in many cases they don't even work without certain diet changes. Removing one's gallbladder complicates things. Omeprazole is a known trigger for LC.

Too many doctors don't respect this disease because "we don't look sick." Consequently, most of them don't understand how to treat the disease. None of them receive adequate diet and nutritional training, so they only understand how to prescribe drugs. For over a dozen years we've been comparing notes and treating ourselves.

Again, welcome aboard, and please feel free to ask anything.

Tex

[kroekatoa]

Hello there. Have you had a CT scan of your abdomen or US of your gallbladder area since having it removed? I work in an ER and a common reason why people still have gallbladder-type pain after having it removed is that gallstones can still form in the bile ducts that were once attached to your gallbladder. This area can also become infected and cause a lot of issues. You should ask your doctor if they would order some imaging tests for you if they haven't already.

Hope you find some relief!!
-Sarah

[mom2zonabby]

Thanks Tex! As you are so informed, maybe you can tell me if you think my plan is a good one. From reading different posts, I need to go on the healing diet. I want to get the aentero testing to help identify trigger foods. Can you recommend which one? Also I’ll even though my blood work comes back ‘normal’ on everything, I can’t help but feel exhausted, and lacking in nutrition. I’d like to start Vit D and the magnesium everyone talks about but wonder, will my body absorb at this stage or should I wait? I’m constantly purchasing different vitamins hoping it’ll make a difference but no luck. Then my dr says all looks fine with the exception of vitamin d which does fluctuate constantly. I guess I’m asking what my first steps should be along with the diet. Thanks!

Hi,

Welcome to the group. You sound like me a couple of years after my symptoms became severe. That's exactly what I said — I can't live like this! So I started keeping a food/reaction journal, hoping to figure out what was causing the problems. Lo and behold it turned out to be a bunch of foods.

Selecting and sticking to a recovery diet is not easy but it's the only game in town. Medications provide only temporary relief, and in many cases they don't even work without certain diet changes. Removing one's gallbladder complicates things. Omeprazole is a known trigger for LC.

Too many doctors don't respect this disease because "we don't look sick." Consequently, most of them don't understand how to treat the disease. None of them receive adequate diet and nutritional training, so they only understand how to prescribe drugs. For over a dozen years we've been comparing notes and treating ourselves.

Again, welcome aboard, and please feel free to ask anything.

Tex

[mom2zonabby]

Hi Sarah!
It’s funny you ask, because my most recent Gi was surprised I hadn’t had one before and put in an order. I’m scheduled for Saturday. Is it bad I’m hoping they find something wrong? Lol I hate when they come back saying tests came back normal. I want to find the problem and treat it! Assured me this isn’t all in my head! Haha well, here’s to hoping they find gallstones!

Thanks again!

Hello there. Have you had a CT scan of your abdomen or US of your gallbladder area since having it removed? I work in an ER and a common reason why people still have gallbladder-type pain after having it removed is that gallstones can still form in the bile ducts that were once attached to your gallbladder. This area can also become infected and cause a lot of issues. You should ask your doctor if they would order some imaging tests for you if they haven't already.

Hope you find some relief!!
-Sarah

[tex]

Yes, if you're talking about the diet guidelines posted at the link below, this is an excellent place to start.

https://perskyfarms.com/phpBB2/viewforum.php?f=79

As to which EnteroLab tests to order, most members order the A1 and C1 Panels. Together they include tests for antibodies to Gluten, Casein (dairy), Soy, Egg, Oats, Beef, Pork, Chicken, Tuna, Corn, Rice, Almonds, Cashews, Walnuts, and White Potato. Those foods are the most likely to cause problems.

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

Those test results will simplify the food selection for your recovery diet. The lab is usually very prompt with the results — they should be available in a just few days.

Tex

[mom2zonabby]

Then that’s where I’ll start, thanks!

[skp]

Welcome to the best group of people you will ever meet.

The Enterolab testing was very worth it to me as I found out quickly what foods I had to avoid.

The importance of magnesium can't be overstated. It took weeks but my fatigue did go away eventually and I now have the same energy I used to have. I use Doctor's Best chelated mag glycinate 3-4 per day, each pill is 100mg) and also Mo Maggie Magnesium lotion which has 250 mg per teaspoon.

Also, vitamin D. I take a Vitamin Shop D, 5000 IU and a vitamin D & K, with another 2500 IU of D.

We are all different so the amounts of magnesium and D will vary from person to person.

My gallbladder was removed in my twenties and I have not had a real issue with it. Good luck with your tests. Please keep us posted.

Susan

[Erica P-G]

Welcome :-)

On another note....once you get settled into some safe foods that your body accepts and you have decided on VitD3 protocol and if you would do better with external Magnesium at this time due to not knowing if you feel you are absorbing it (which many of us have done external lotion and oil to begin our process of healing - even epsom salt soaks) then if you still can't achieve a new normal stool then a product called Cholestyramine (real sugar brand) may be an answer to how you digest your foods without a gallbladder. It is worth bringing up at a later date as a few members including myself have tried it (even though I have my gallbladder) and it had helped at a certain point in my healing process. For you it may be a continuing helper at some point after a bit of healing takes place.

You will notice that you need really good amounts of protein at every meal during the day to start this process as we get sooo hungry!

After removing Gluten and Dairy from my diet I noticed the acid feeling in my stomach disappeared (I will never take a PPI or Omeprazole ever again). I stayed on a very basic bland diet for a few weeks more and stayed away from Soy and Egg too....I sent off for the A1 & C1 Enterolab and that helped me even more so. Healing takes time but with the support system here and all the kindness to keep going I have persevered....and so will you A while on this protocol and taking the VitD and Magnesium the brain fog began to lift and after a few months I introduced a B Complex (minus anything like gluten, dairy, soy or egg in it) and my energy slowly started returning too....

It is progress not perfection with LC, one day at a time and we give it a stretch of time before evaluating ourselves because the healing can be so gradual that it takes time to notice how we are doing.

Good luck with your testing