Recently diagnosed with MC

[Jackie]

Hello,
I received a call from the doctors nurse just 4 days ago saying that my biopsy results were in from the EGD and Colonoscopy. EGD showed Possible Barrett's esophagus on the day of exam. Results infection and open sores in the esophagus although celiac disease was ruled out. Doc said to start Priloses to try and heal the esophagus. This confuses me because I rarely get heartburn. Nurse said yes it could have something to do with my upset stomack. Lower GI results, microscopic colitis. She said I am to start taking steroids (budesonide) for 8 weeks and have to come in see doctor in 8 weeks for further tests. I was not told anything else and had no idea what to ask of course. I was just glad to know there was something with a name that had been causing my D and C for many years. For a long time I told myself it was IBS, stress and overworked. To busy to deal with it. It was not until I started having vascular problems two years ago that it all just fell apart. One thing after another. I had a rear blockage (especially for my age) in right subclavian artery called subclavian steal syndrome. Doctors close to home put me on blood thinners and 325 mg aspirin they said for the rest of my life. Surgery was to risky, because clot would go straight to the brain. Many tests and doctors later went to Mayo clinic had a stint placed in artery. After three months came off of blood thinners except for aspirin. Now I have to admit I would not always take the aspirin because for as long as I can remember it would give me very bad stomach aches. January of this year had first rib and scalene muscle removed for thoracic outlet sydrome. (blockage in subclavian vein as well). I am B12, D and Iron deficient. Only take B12 meds now. have to have my labs done again, but family doc wanted to wait till I had my upper and lower gi completed. Now I only started taking my aspirin again because gi doc said I had to in odor to do the test. As soon as it was done I quit aspirin. Now I know my vascular would not approve but it is just to much on my stomach. I also took myself off cholesterol meds for the same reason. So as far as the aspirin is concerned I do not think that is the cause of my mc. As I started to look up the condition I am more confused and concerned than ever. I have no idea what form I have. I am also concerned about osteoporosis since I was tested about 6years ago and had osteopenia in the left hip. ( family history of it) So three days on steroids now, first two no change today very little movement although I go through long bouts of D's and a day or two of C's. I have no idea what is normal for me. If that is even possible. Gi doctor had me try lactose free diet for three days while waiting for test to be done but no changes. I was not told to try GF diet. After reading different posts I feel I should just do it on my own. Also my understanding is that I will not come right off the Budesonide 9mg daily completely in 8 weeks. Has anyone came straight off? Also I have worse stomach pain now is this a side effect from meds? I do not feel like eating much at all, which is probably not good already to thin. I hope I do not get C because for me I am in more pain, gas and bloating is just to much, may sound crazy but I would rather be stuck for a few hours glued to the pot. I am also wondering if my vascular disease is linked to my MC. I have a check up next week with vascular doctors at mayo clinic. I am sure they will answer some of my questions and hopefully say just stay off aspirin. I could go on for ever.
Thank you everyone for letting me vent if anything.
Jackie

[tex]

Hi Jackie,

Welcome to our internet family. Wow! You've had way more than your fair share of health problems recently.

I wish I could tell you that controlling MC is easy, but unfortunately that's not the case. It takes dedication and close attention to diet, but the symptoms can certainly be controlled.

MC is typically associated with acid reflux/GERD, so there is a good chance that your Barrett's symptoms are linked with MC. We have several other members who also have Barrett's. Using a PPI will lower your stomach acidity (which your doctors are aiming for, in order to reduce the potential damage to your esophagus, but the problem with PPIs is that they tend to cause more problems than they help, and one of the problems is that they commonly cause MC. They also promote osteoporosis. But the worst problem with them is that they cause the very problem that they are prescribed to treat, namely acid reflux, because they weaken the lower esophageal sphincter (LES), which allows stomach contents to backflow into the esophagus. You won't notice it, because they suppress the acidity, but that means that if you ever try to wean off a PPI, your acid reflux symptoms will be worse than they were to begin with, because of the weakened LES.

I'm not a doctor, but if I were in that situation, I would use an H2 blocker, instead, because an H2 blocker will lower your stomach acidity, to help protect your esophagus, without most of the side effect risks of PPIs. It's much easier to wean off an H2 blocker, than a PPI. Examples of H2 blockers include:

Famotidine (Pepcid AC, Pepcid Oral)
Cimetidine (Tagamet, Tagamet HB)
Ranitidine (Zantac, Zantac 75, Zantac Efferdose, Zantac injection, and Zantac Syrup)
Nizatidine Capsules (Axid AR, Axid Capsules, Nizatidine Capsules)

Based on our combined experience here, the first rule of using budesonide is that when constipation symptoms begin to appear, it's time to reduce the dose, because budesonide can definitely cause constipation problems that will become worse, if the dosage is not reduced. And the reason why we recommend slowly tapering the dosage (especially the final stages of the treatment), is because those who discontinue the drug too abruptly, virtually always suffer a relapse. There is a medical reason for that, but to save time and length, I'll skip it for this post. If you need details of the reason why that happens, please ask, and I will explain in more detail in a later response.

You definitely need to take a vitamin D supplement, because MC depletes vitamin D, and a vitamin D deficiency makes us much more vulnerable to the development of additional autoimmune diseases.

But the most important reason why you need to be taking a vitamin D supplement is because vitamin D deficiency tends to cause acid reflux/GERD. Taking a substantial dose of vitamin D (such as 5,000–10,000 IU per day) will help to prevent acid reflux/GERD. Some of our members here have been there, done that, and it works. In fact, if my vitamin D level were below 20 ng/mL, I would take 15,000–20,000 IU per day for a few weeks, in order to get my blood level up to where it will begin to help control those symptoms.

A lactose-free diet won't help, because most of us are sensitive to casein, the primary protein in all dairy products, so we have to avoid all dairy products. But the main problem with our diet is gluten. Despite a negative celiac test, virtually all of us are extremely sensitivity to gluten, and in order to heal, and get our life back, we have to meticulously avoid all traces of gluten in everything we put in our mouth (or on our skin). The type of gluten sensitivity that we have (non-celiac gluten sensitivity) is not detected by the celiac tests that the doctors use. In fact, the mainstream medical community doesn't even have a approved test to detect non-celiac gluten sensitivity. The antibodies to gluten (and other food sensitivities) are in the intestines, not in the blood, so the only tests that will reliably detect the type of food sensitivities that we have is the stool tests offered by EnteroLab, in Dallas, TX, and most mainstream doctors aren't even aware of them, or if they are, they deny that the tests are accurate. The doctors are wrong, of course, and our combined experience shows that those tests are the only ones available that are accurate and reliable.

MC can affect every organ in the digestive system, so it's certainly possible that it may cause vascular issues as well, because MC is a chronic source of inflammation, until we eliminate all of our food sensitivities from our diet, so that our gut can heal. Also, untreated gluten sensitivity can contribute to cardiovascular problems, so changing your diet may help to relieve your vascular issues.

There is a prescription vitamin mix that may help with your vascular issues, also. It's called Metanx, and it's a combination of the active forms of vitamins B-12, B-9, and B-6. It's commonly prescribed to treat peripheral neuropathy, associated with diabetes, but I take it to treat peripheral neuropathy caused by years of gluten damage. However, I notice that it is also prescribed to treat endothelial dysfunction (which is a vascular issue). You may be low on all of these B vitamins, and that could be contributing to your vascular issues. Also, some people are incapable of properly converting some of these vitamins into the active form used by the body. Since Metanx contains the active forms of these vitamins, it works for people who have problems converting these vitamins.

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

Tex

[tex]

Jackie,

I forgot to mention that PPIs are also known to cause anemia, by preventing the parietal cells in the stomach from producing intrinsic factor. Intrinsic factor is necessary for the absorption of vitamin B-12. Therefore, if you decide to take a PPI, be sure that you use either a sublingual form of B-12 (lozenges that are dissolved under the tongue, where the B-12 will be absorbed directly into the bloodstream, in the mouth), or B-12 injections.

Tex

[Jackie]

Thank you for the reply. See vascular today. Will get back with you.

Jackie

[Jackie]

Hello Tex,

Well visit at Mayo Clinic did not go so well may end up having another surgery for the thoracic outlet. :(
Anyway had to get my GI reports to take with me. Lower GI Colonic Mucosa with increased Intraepithelial Lymphocytes. Differential Diagnosis includes: Lymphocytic colitis, early celiac spruce., NSAID induced injury and a resolving phase of an acute infectious colitis. Upper GI, Chronic Gastritis with secondary reparative chages. fibrosis, vascular congestion scant lymphocytes and plasma cells and mild reactive atypia. Small bowel Duodenal mucosa with increased intra-epithelial lymphocytes. Histological findings are non-specific however increased intra-epithelial lymphocytes may be viral gastroenteritis, early celiac disease, bacterial overgrowth and peptic duodenitis.
Now I do not understand all this, vascular doctor did not discuss with and I am no doctor, however I just wonder with the celiac disease even mentioned why did the GI doctor tell me to go on the diet even to be on the safe side. Oh maybe because blood test all came back normal. Well I asked vascular doctor about asprin, he said it is up to the GI Doctor if feels it is causing to much damage. He also told me I would have to ask my family doctor about Metanx. I did stop taking the PPI. Although have not started the diet yet. Lots to learn there. The steroids has not started to work either. Seems a little worse right now and my husband said your gonna gain weight,
not lost 4lbs this week. I am just so overwhelmed. All your information did help alot and I appreciate your help. I know this will be a long journey and it helps to be able to have a site like this for help.

Thank You,

[tex]

Hi Jackie,

Many of us have increased intraepithelial lymphocytes in our small intestine. There are 2 possibilities there. If we have a celiac gene, then the increased lymphcytes are an early stage (Marsh 1) of celiac disease. Without a celiac gene, they are simply evidence that MC can affect any part of the digestive system.

It typically takes years for enough damage to accrue to the small intestine to yield a positive celiac diagnosis. In fact, it currently takes an average of 9.7 years from the onset of symptoms, until a celiac diagnosis can be officially determined for most patients. Doctors are vane enough that they prefer to let the patient suffer for years, so that they can get a positive celiac diagnosis, rather than to advise the patient to cut gluten out of their diet at the first signs, so that they can begin to heal (because once gluten is removed from the diet, the diagnostic markers will disappear). IMO, that's cruel and inhuman treatment, and it should be illegal, but it's standard operating procedure for most GI specialists.

I also forgot to mention in my earlier response that untreated gluten sensitivity is known to cause GERD. Many of us here have seen our GERD problems fade away after we removed gluten and other food sensitivities from our diet.

You are very welcome,
Tex

[JLH]

http://www.berkeleywellness.com/self-ca ... irin-safer

[Jackie]

Tex,

Going shopping for some Gluten free foods today. Not sure what I will be getting just a few things to try. And my daughter ordered your book for me. Can not wait for it to come. (Love her)

Joan,

Thanks for the link you shared. That is the aspirin I had been taking 325 mg. No longer! I will have to take the risk with my vascular problems this MC has been just to much.

Today starts a new day.

[ldubois7]

Great information, Tex! I'm sending the info on PPI's to my Dad. He did try to get off of them recently, and his symptoms became worse, so his Dr. put him back on them! UGH!

[tex]

Linda,

You and your dad are probably aware of most of the foods that should be avoided (because they promote acid reflux), but be sure that he is also aware that he should never sleep on his right side, because that places the LES below much of the stomach, and if/when the LES relaxes its clinching strength, stomach acid will backflow into the esophagus (whether we are awake or sleeping). If he is able to wean off the PPI, his LES will slowly regain its strength, because the higher the acidity of the stomach contents, the more tightly the LES will clinch together, to hold back the acid. IMO, avoiding sleeping on the right side is very important when trying to heal the damage done by PPIs.

I never had a significant problem with acid reflux until the doctor in charge of my recovery while I was in the hospital, insisted that I take a PPI for several days while recovering from surgery. After that, I had to learn to not sleep on my right side, because whenever I did, I would sometimes wake up with a mouth full of stomach acid. It took months for my LES to regain it's strength, and it's still risky for me to sleep on my right side, so I continue to avoid that.

Tex

[ldubois7]

Thank you....I will pass this on to him.

I appreciate your help!

[Gabes-Apg]

Linda
my mum had been on PPI's for 7 years.
She was Gluten Free / Dairy Free when she had Crohns, but when she got her stoma 3 years ago she started eating gluten and dairy again. In December 2013 I encouraged her to give up Gluten and minimise dairy...

4 months later, no more PPI's, no joint aches, less mucus, sleeping better, not needing H1 blockers as much, more energy.
(She is 82)

[Gabes-Apg]

Jackie
whoa, what a journey. Understandably you are tired, and quite overwhelmed with this weird MC thing!!

take a few deep breaths, as tex has mentioned there is no easy way to 'fix' MC. Many people here have multiple health conditions and have to tweak and juggle things a bit to get the body happier with less symptoms.

The medical system in our countries does not support people with multiple issues, that can have chronic symptoms if not managed correctly.
The system is very silo'd and the specialists will not step on the toes/make comment on the area of another specialty.
Because of this, informed self management by the patient is the key to success.

There are hundreds of people here that were negative on the coeliac blood test, with encouragement they give up gluten and the digestion improves, the joint aches fade, the foggy brain fades, headaches reduce, Gastric Reflux improves.
For some the improvements come within weeks, for most it can be a couple of months. It is the cheapest and best thing you can do for your long term health. (that and Vit D3 supplementation)

Most people here do have multiple intolerance's, the top 4 are Gluten, Dairy, Soy, Eggs, the next top 6 are things like yeast/nitrates/sulphides, Oats, Corn, various nuts, various legumes, nightshades etc.

This can be a shock at first, especially when you are tired and feeling poorly, and coming to terms that there is no quick fix for MC.
take it slow, there are wonderful supportive people here that can help you navigate the best path to wellness.

[ldubois7]

Thanks, Gabes for the note....my Dad is Italian, and I doubt he would go gluten free at age 80, but maybe he would cut down on the pasta.....he did try rice pasta and didn't like it. I will suggest lowering gluten and dairy again...maybe he'd conduct an experiment and cut out G & D for a while to see how he feels.... I'll give it a shot!

Jackie...Hang in there! I agree that you need to start with eliminating gluten, dairy, soy, & eggs first. I did the Enterolab testing and found many more food sensitivities. It takes a while to figure it all out, but that's why we are here....to support you in getting better! Stress is also very tough on us. My Aunt passed away last week unexpectedly, and I had a bit of a relapse from the stress of the funeral, and I've been fine tuning my diet for 1 & 1/2 years! Have you considered the Enterolab testing?

[tex]

Linda,

IMO, corn pasta is much better than rice pasta, and much closer to wheat pasta. I've heard some say that they prefer it over wheat pasta. I like Pasta d'oro brand (by Sam Mills), but Monique says that Ronzoni GF pasta is better. I haven't had a chance to try it yet, because I tend to buy products I like in volume, so it will take a while to use up all that I have on hand.

Pasta! Pasta! Pasta!

Tex