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New Member, 19, Female, LC

 
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JaneTX

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PostPosted: Fri Jan 12, 2018 2:58 pm    Post subject: New Member, 19, Female, LC Reply with quote

Actually, I'm her mom, caregiver and patient advocate. Early December 2017 she received a diagnosis of LC.

She has been ill since spring of 2015 with, at first, symptoms everywhere except gastrointestinal. Vague abdominal pain started around the end of 2015, 2016 started with an ER visit that ruled out appendicitis, a couple of IBS diagnoses with various medicines that did not work, Celiac diagnosis (complete with villous atrophy, antibodies and the genes) in August 2016 (h. pylori negative), gallbladder removed in October 2016, which significantly helped with the abdominal pain, but she would still get bouts afterward. 2017 was filled with doctor visits trying to figure out swallowing difficulty, throat pain and swelling and reflux, joint pain, a thyroid that was starting to tank, and continued abdominal problems. We finally decided to take some advice and found a new rheumatologist to try to address inflammation symptoms, who suggested if all the blood tests keep coming out normal, the problem is in tissue somewhere and that we need biopsies. So we went back to the gastroenterologist who agreed to do a colonoscopy (the colon visually looked perfectly normal) and biopsies. He was so excited at the followup visit, "I found your inflammation!" and the LC diagnosis.

She has been on a gluten free diet since August 2016, in fact, she is on a very restricted diet right now because she can't tolerate nearly everything. No dairy, corn, soy, nuts, fish, beef, most vegetables, most fruits, most spices. We're getting by with mostly compounded medicines, lots of supplements (we like gummies as they avoid the starches in tablets), vitamins, electrolytes, chicken and turkey (no eggs), rice noodles, strawberries, brussels sprouts (I have an awesome recipe), Free2B snacks. The diet has not improved any of the gastro symptoms, though a recent endoscope (h. pylori still negative) showed the villi have healed and are now normal, and the antibodies went from > 128 to just 28 (10 and under is normal) and the Gastro thought we are compliant with a gluten free diet.

She has been on 40 mg prednisone for a month and a half now, and the rheumatologist started her on 1g of Sulfasalazine one month ago. Just 2 days ago the rheumy upped the Sulfa to 2g. It was about a month ago that the diarrhea finally started, and it's been constant ever since, nevertheless she prefers that to the bloating and constipation and abdominal pain she was having prior.

We've been wondering if 1g of Sulfa is enough to have an effect on diarrhea (I can understand the Rheumy starting conservatively to see how it goes), or if we really need to be on 2g minimum before we start seeing any results. The 1g of Sulfa has been helping with her joint pain and stiffness. We know we need to get off the prednisone as soon as possible but we need to make some progress with something else (hopefully the Sulfa) or all the other symptoms helped by prednisone (a story by itself) will come roaring back.

I think she has a generalized lymphocyte disorder. We have an appointment early April with a new GI specialist (our current Gasto is a good diagnostician but admits this stuff is not his specialty), we're looking for a thyroid specialist right now, and the Rheumy is watching how she does with the new Sulfa amount and wants to recheck some stuff in a month.

The poor child is actually excited she has an honest to goodness diagnosis! We're in such a deep hole right now, we've been disheartened that progress has been at a crawl and been wondering if we're missing something.

Jane
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Jan 12, 2018 4:08 pm    Post subject: Reply with quote

Hi Jane,

Welcome to the forum. Sorry to hear that nothing is working well. Like you, I'm also wondering if you're missing something because it sounds as though you're doing everything right — except for the sulfasalazine. In the body, one of the metabolites of sulfasalazine is sulfapyridine, which is toxic or can cause an allergic reaction in many people. I assume she's taking that risk because she has arthritis symptoms. But that drug is ill-advised for someone who has LC.

Why is she still taking a drug to which she's clearly reacting adversely? Arthritis symptoms are a normal part of LC. Those symptoms will automatically resolve when the leaky gut that causes LC is resolved. Is she taking magnesium? Constipation is a symptom of a chronic magnesium deficiency. I'm not a doctor, but IMO her intestines will never be able to heal (the increased intestinal permeability and LC) as long as she's taking a drug to which she reacts. She won't prefer the diarrhea when it eventually becomes spontaneous (uncontrollable) and she begins to have "accidents".

If she can't tolerate fish, she probably reacts to chicken also (they're both high-histamine foods). Many of us react to chicken, including me if it has been stored in the refrigerator for more than 24 hours. Turkey is safe — no one reacts to turkey, or lamb.

Either a drug or something in her diet is causing the joint pain. It might be mast cell activation disorder (NCAD). Some of her symptoms (swallowing, GERD, etc.,) sound like severe vitamin D deficiency or a hiatal hernia. Do you know if those have been ruled out?

Sorry if my response sounds incoherent — I'm mostly just thinking out loud.

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

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Fri Jan 12, 2018 4:29 pm    Post subject: Reply with quote

Hi Jane,

Welcome to the forum! Have you read Tex's book? The link is in the upper right hand corner. It is the only book written on MC.
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Erica P-G
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Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Fri Jan 12, 2018 6:02 pm    Post subject: Reply with quote

Hi Jane,

Really need to know where the VitD3 levels are and how much and what kind of elemental Magnesium you have her on? As soon as I got on that regimen of just those two I started feeling sooo much better, and since your daughter is gluten and dairy free she ought to see big improvement with the right level of VitD and Magnesium daily.

I think once she hits on her basic safe foods and incorporates the D and Mag she will start to feel like a new person....can't stress those two enough I was incredibly low at 9 with VitD and now since I learned that it takes Magnesium in order for the VitD to work I am at 83 with my D....I am feeling so much better and my gut is healing much better now days to the point I know what foods actually affect me hours or a day later instead of guessing what I ate over the last week to make me feel uneasy so late after the fact.

Also with the gallbladder gone....she will most likely need the aid of Cholestyramine now...to help bind those bile acids (BAM Bile Acid Malabsorption) from reaching the Large intestine where that will create D no matter if she is eating safe or not.
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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henrym
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Food Intolerances : gluten, casein, soy, peanuts, nuts (not sure which), avocado, lots of fruits, chocolate, ...
Location: China

PostPosted: Sat Jan 13, 2018 8:17 am    Post subject: Reply with quote

Hi Jane,

Welcome to the forum!

Less is more.. I would cut back even more on the diet. Cut out the supplements (except d3 and topical magnesium) the chicken, rice noodles, Brussels sprouts and strawberry(!). Also the sulfalazine.

I would let her eat congee with pork or another safe meat for a couple of days, together with the d3 and topical magnesium, and see if she improves. This always does it for me. Then slowly add more safe ingredients to the congee and when that sits well go to more solid foods.
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Sat Jan 13, 2018 12:40 pm    Post subject: Reply with quote

Quote:
Less is more.. I would cut back even more on the diet. Cut out the supplements (except d3 and topical magnesium) the chicken, rice noodles, Brussels sprouts and strawberry(!). Also the sulfalazine.


Yes, yes, yes to what Henry said.
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Tor
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Joined: 13 Oct 2014

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Food Intolerances : Gluten, Coffee, Tea, Aspartame

PostPosted: Sun Jan 14, 2018 3:38 am    Post subject: Reply with quote

I’m so sorry to read about this. But I agree that it’s a good thing that the diagnoses now are falling into place. IBS is not a good place to be with celiac disease, MC and/or bile acid malabsorption.

I can’t add much to what the others have proposed, but I wonder why she’s on prednisone and why the gall bladder was removed?

Budesonide/Entocort is the steroid of choice for MC. It releases in the ileum and colon and generally works better than prednisone with far less side effects. Bile acid malabsorption is often secondary to MC, and cholestyramine helped me a lot while I was figuring out my sensitivities. It looks like cholestyramine works well for people without gall bladder as well, so I suggest you discuss a bile acid binder like cholestyramine with your daughters gastro doc.

Best of luck, Tor
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JaneTX

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PostPosted: Sun Jan 14, 2018 8:53 pm    Post subject: Reply with quote

Thanks so much all of you for your prompt responses. I'm unfortunately not so quick at responses.

I have ordered Tex's book.

Well over a year ago, as she started to react to more and more stuff, I discovered Mast Cell Activation Syndrome (or Disorder) and bought Afrin's book. We tried the Zyrtec/Zantac combo and it helped quite a bit and I thought we were on to something. We finally found an allergist familiar with Ketotifen and we were able to obtain a compounded prescription, once she started taking that, she was able to completely give up the Zyrtec and Zantac. She's currently on 2 mg a day, and I discovered Ketotifen affects lymphocytes too (but I can't remember offhand how). I'm not entirely convinced she has a mast cell problem, her tryptase level was normal, and that lymphocytes can cause a lot of mischief too.

About that time she was having swallowing issues and bad reflux, that's when we had the endoscope to check for EoE, and I asked if they could also check for mast cells. The report came out normal, it did mention using "special dyes" on the specimens, but did not indicate if they specifically looked for mast cells. Now just last week I ran across the article, "Lymphocytic Esophagitis: A Newly Recognized Mimic of Eosinophilic Esophagitis" https://www.omicsonline.org/open-access/lymphocy...357.php?aid=65265 - 2015 - hmmm ... Anyway, all of that has pretty much resolved now, and no hiatal hernia.

She had her gallbladder out in 2016, US was normal but HIDA was 7% so it had to come out and she's doing better on that front. I asked why and how did the gallbladder fail, and both the Gastro and surgeon shrugged and said they didn't know but it happens. Then I just ran across another 2015 article, "Lymphocytic Cholecystitis/Cholangitis" https://academic.oup.com/ajcp/article/143/1/36/1760992

She is having thyroid problems, one Endo actually called it "autoimmune thyroiditis" despite negative Hashimoto's antibodies, and I've noted that Hashimoto's is also considered "chronic lymphocytic thyroiditis".

Perhaps it's not coincidental that some folks with LC also have thyroid problems or other body part problems that might all be a result of generalized lymphocyte mischief (depending on the organ the lymphocytes have decided to pick on).

Food allergies - Awhile back she wanted to try an elemental diet, but all the formulas we were able to find had corn derivatives for some ingredients (duh). So instead we've been trying to find supplements and foods she can tolerate. For most of this ordeal she hasn't had diarrhea, and Vitamins D and B's and mineral tests have all come back normal. We are trying to stay on top of them and the minerals with supplements and electrolyte drinks. We're familiar with the need for magnesium and D3, and K2, etc. We've read up on low histamine diets and low lectin diets and are generally following that already. Chicken - we've loaded up on turkey and duck in our freezer, as some dogs and cats develop intolerances to chicken, we've decided to try novel proteins for a spell to see if she's reacting to chicken protein. She tried rice recently and bloated up really bad despite drinking lots of water. But I'll look into a congee recipe. She can't tolerate pork, and anything else with vitamin C (just strawberries), or any other vegetables except brussels sprouts, so there's nothing else left to cut back to.

She's also on 60 mg of propranolol - I read that propranolol is contraindicated for LC, I don't know why, but she really needs it for dysautonomia so it's pretty much nonnegotiable. (She doesn't have POTS but it stabilizes her heart rate and she feels better.) I ran into publications discussing beta-adrenergic receptors on lymphocytes and I thought "good grief, what the heck do lymphocytes do with epinephrine?!"

We are considering asking to change to mesalamine from sulfasalazine, I was wondering if sulfa is a drug that needs to be tapered or can it be stopped cold-turkey?

And we'll look into Cholestyramine, and budesonide. We need to discuss this with her Rheumy who prescribed the sulfasalazine as we're in between Gastros (current one is not familiar with LC and the specialist isn't until early April, hoping we can get bumped up).

Jane
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Erica P-G
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Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Sun Jan 14, 2018 10:57 pm    Post subject: Reply with quote

Hi Jane,
Wow you are so on top of all this...you go Mom!!

I wanted to ask if your daughter has the MTHFR gene? It’s a methylation issue that can’t convert folic acids to folate so those individuals need to take folate in its pure form. I ask due to the thyroid thought and all the LC connections. My husband and his mom carry the genes, as soon as the folate and b12 were brought into their diets it has helped overall health.

Also talking about the heart I’ve personally learned that when we aren’t absorbing nutrients very well that’s when we need higher doses especially the VitD3 and magnesium. I had to use a lot of external mag to get to a good place. Medicines counter against normal daily intake so extra is needed all the time to keep up with the bodies demand. Also what is “normal” levels?? Tex has written a profound book on VitD that opened my eyes, I highly suggest it 😉 I don’t trust drs to give me normal levels anymore...I question everything, lol.

Keep up the great work!
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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Tor
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Food Intolerances : Gluten, Coffee, Tea, Aspartame

PostPosted: Mon Jan 15, 2018 1:33 am    Post subject: Reply with quote

Hi, Jane
I think you should consider that the gut inflammation is at the root of your daughter’s problems. I got MC when I was 28, and then came several (other) autoimmune conditions, among them diabetes 1 and low grade autoimmune hepatitis. MC causes leaky gut, and diabetes 1 and autoimmune hepatitis are both very tightly assosiated with leaky gut. The same goes for rheumatoid arthritis, autoimmune thyroid disorders and several other autoimmune diseases. Up to 42% with MC have (other) autoimmune diseases, and the reason might very well be the inflamed and leaky gut in combination with genetic predisposition.

My own take on this has been to try to heal the gut. I’ve discovered 3 main food sensitivites (gluten, coffee and aspartame) and this has brought me into remission for over a year. The D. is gone, but there are some mucus/residual inflammation going on. The plan now is to take out the residual inflammation with low dose Entocort/budesonide in an effort to tighten the gut and spare the liver for the constant antigen (food peptides, bacteria) exposure. One research project didn't show reduced gut permeability after budesonide treatment for MC, but I think it's worth a try anyway.

I have some low grade joint and muscle pain as well. The rheumatologist didn’t find any rheumatic disease, and more or less just stated that it goes with the territory with any kind of gut inflammation. I think the best theory I’ve seen is molecular mimicry/cross reactivity between antibodies against food antigens/bacteria and self tissues in joints and muscles. As Tex says above, treating the leaky and inflamed gut has potential to treat the rheumatic symptoms as well.

—Tor
BTW: I recommend this article as a supplement to Tex's book if you want to read further on the scientific view on MC, including leaky gut and treatment options: https://ac.els-cdn.com/S1873994612002565/1-s2.0-...5290ad453f31a9502
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carolm
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Food Intolerances : Gluten and soy.
Location: Kansas City

PostPosted: Thu Jan 18, 2018 1:45 am    Post subject: Reply with quote

Hi Jane,
I don’t have much to add to the good advice you’ve already received. I just wanted to reach out and welcome you to the board.

I’m glad you are looking into Budesonide and cholestryamine.
Based on my experience (and others here) Budesonide will be easier on the body than sulfasalazine and more successful, if she needs a med at all. It has fewer side effects than prednisone since it opens up in the colon and applies the medicine there. The body absorbs only 10-20%.

The other most helpful thing I did was to get the tests from Enterolab. It was the fast track to knowing what I was reacting to. I had to eliminate gluten, dairy, soy and eggs, plus pork. Now in remission, I still cannot have gluten or soy. Dairy I’m just better off without. I have successfully added eggs and pork back into my diet.

Reactions can be so food specific it will make you question your sanity. Soy is the one thing that made me hurt all over, plus made me terribly nauseous, and it still will. Even peanut butter (since peanuts are also a legume) would cause me to hurt all over the next day.
I kept a ‘food and poop’ log in a planner where I could write what I ingested and how I felt the next day. It helped me spot trends I might not have otherwise. I also took it to GI doc appointments and she liked to look at it too.

I’m sorry you had to find us but you have come to the right place for help. As far as LC and leaky gut go- the diet heals and that brings remission. It’s a bumpy road at first but the perseverance will pay off.

Again I am sorry your daughter is going through this but I think she’s fortunate to have you working so hard on her behalf. It will get better.

Best wishes- Carol
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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JaneTX

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PostPosted: Thu Jan 18, 2018 11:34 pm    Post subject: Reply with quote

Yesterday we got prescriptions for Cholestyramine and budesonide from the gastroenterologist and today she started the budesonide. We're going to wait a couple of days before starting the Cholestyramine (one thing at a time). We were wondering how long it might take before we see any noticeable effects (one way or another) from the budesonide.

She's still on sulfasalazine, she says her other symptoms (including her eyes) have noticeably improved with it. We are considering the switch to mesalamine as recommended, but she wants to wait a tiny bit longer as she doesn't feel like she's reacting negatively in any way to the sulfasalazine.

She has also been feeling very hypothyroid lately (even has a scalloped tongue!), and January 5 tests showed TSH 0.94, Free T4 0.97, Free T3 2.2, and Reverse T3 15.9. Her PCP has given us the ok to increase her Cytomel from 10 mcg to 15 mcg while we try to find a new endocrinologist. She feels if we can find a competent endocrinologist who can get her thyroid hormones balanced, then her gut will start behaving better too.

(I'd like to add to Tex's note that more of the hardest material known to science can be found in the skulls of Endocrinologists who define subclinical hypothyroidism by test numbers defined by endocrinology associations rather than by visual clinical symptoms presented by patients.)

Thanks y'all - Jane
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Tor
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Food Intolerances : Gluten, Coffee, Tea, Aspartame

PostPosted: Fri Jan 19, 2018 1:20 am    Post subject: Reply with quote

Hi, Jane

I think you’re making good choices trying budesonide first, and then cholestyramine. I reacted very quickly to both. I went from 6-8 watery D’s a day to formed stools in 3 days when I first started on 9 mg Entocort. When I started tapering the Entocort, the stool quickly got looser, and I supplemented with cholestyramine. When completely off Entocort, I had to use 2x2 packets (16 g) of cholestyramine to keep the D. at bay. When going on and off cholestyramine I had effect within 2-3 days.

I know others here react much slower, but both Entocort and cholestyramine CAN be effective in a few days.

Some doctors seem to think that sickness and health is a binary thing, and if you’re just on the right side of a cut off, you’re healthy. The real world is not that easy, and my gastro doc has pointed that out to me several times. There are sensible doctors out there.

I cross my fingers for your daughter.

— Tor
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brandy
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Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Fri Jan 19, 2018 9:55 am    Post subject: Reply with quote

Hi Jane,

Like Tor I responded to budesonide in 3 days--solid stool 1 movement per day. Within 2 weeks I had constipation and had to step down to two budesonide per day from 3.

I've used both budesonide and cholestyramine in the past. I'm not your doctor but I think typically the two drugs are not used concurrently by our forum members as they are both effective individually. I'm sure they have been used concurrently by some.

Budesonide is generally pretty effective particularly for a younger person. I'd probably give the budesonide 14-30 days and see if you want to add the cholestyramine.

The problem with starting both within 3 days is if they work--you don't really know which one is effective. Also if there are side effects how do you know which drug is problematic.
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henrym
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Food Intolerances : gluten, casein, soy, peanuts, nuts (not sure which), avocado, lots of fruits, chocolate, ...
Location: China

PostPosted: Fri Jan 19, 2018 1:53 pm    Post subject: Reply with quote

Jane, effects with budesonide will be quick. Like Brandy I also responded in 3 days.
I also agree with Brandy to not use both budesonide and cholestyramine. First give Budesonide a try. For most of us it is very effective.

Please understand that less is better for now. Let her follow the strict diet in combination with budesonide vit d3 and topical mag. I would cut out everything else for now. The other medication she uses might very well interfere with her recovery.
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