New member!

[springerj]

My name is Julie. I am a 36 year old with three very active boys:) I am posting to say that I really appreciate this site already! I have learned a lot just browsing through the topics. I also wanted to give my history.

My chronic diarrhea began eight years ago after the birth of my middle child. At that time I chalked it up to IBS. It didn't seem to get any better and actually was maybe a little worse. I had my gallbladder checked and it was functioning at 5% so the surgeon removed it. That did make matters worse:( Five years ago I was recommended for a colonoscopy that was normal except for a benign polyp (I do not believe that the GI did any biopsies. Not 100% sure of that though.). I was dx'd with IBS. The symptoms have continued with chronic watery diarrhea and abdominal pain. This seems to be bad for a couple of weeks and then start again and last for some time. Due to the polyp it was recommended I have a five year f/u colonoscopy. That was due in August and I kind of put it off.
On 9/13/13 I rec'd a flu shot. That evening I spiked a fever that continued for at least two weeks. During this time my doctor did a chest xray and labs that were all normal. The fever seemed to go away for a couple of weeks. I did have diarrhea but did not consider it as a symptom because this is such a way of life for me. Again, the fever spiked. I have now had chronic intermittent fever for two months. My GP sent me to a hematologist/oncologist and suggested I have the colonoscopy. I was very nervous about the appt with the hematologist. He ordered some labs (all normal except deficient in vit D) and an abdominal/pelvic CT scan. He was basically checking for lymphoma. I had the colonoscopy two days prior to the scan. The colonoscopy was normal and he took several biopsies. The abdominal CT scan only showed inflammation in the sigmoid colon suggestive of crohns/celiac/colitis/diverticulitis and recommended colonoscopy. HA! I saw the hematologist today but have not heard results from the GI. The hematologist had the results of my biopsy. This along with the CT scan leads him to believe I have microscopic colitis. He feels that possibly the flu injection triggered the flare up and is recommending steroid treatment. So that is my story and I feel certain this forum is going to provide me a lot of education. Thank you all so much for the support I see you giving each other and I am sure I will receive.

[Leah]

Let me be the first to Welcome you Julie.
Wow, eight years of D. No wonder you are vitamin D deficient. When we are having D, it's unlikely we are absorbing many of our nutrients.
You have come to the right place for help. I had a colonoscopy within a month of the chronic D and did opt to go on Budesonide ( Entocort) WHILE I CHANGED MY DIET. I spent 6 months total on the drug. I'm sure you if you have been reading posts from this forum, you have discovered that diet is the path to getting better. The drug will relieve you of the worst of the symptoms, but as soon as you are off of them, your symptoms will come back if you haven't addressed your diet. Most GI docs still don't think food is a big factor ( eye roll). Many on this forum have gone into remission with diet alone. It can be done, but you have to be ready to make some big changes to your diet.

Most of us are gluten intolerant. At least half can't eat dairy. Many must also eliminate soy, and some can't eat eggs either. Those are the big 4.
Then there are the foods that don't CAUSE inflammation, but can make getting better much harder. I call them irritants. Those include RAW fruits and veggies, salad, beans and legumes, acid foods like tomato and citrus, nightshades, too much sugar, sugar substitutes, caffeine….etc. These foods can be tested back into your diet once you feel better.

Sounds daunting, huh? All of us approach this whole thing our own way. Some just take gluten out and see if that's enough. Others ( like me), cut most of it out to feel better the fastest, and then add things back in later. This process takes time and patience, but know that most of us here are soooo much better then we were when we first started this journey.

A good idea is to buy Tex's book. He is the administrator of this site and I'm sure will chime in. Just click on the picture of it in the upper right hand corner of this page to take you straight to Amazon.

Again, welcome and ask any question you have. We are all here to help each other :)
Leah

[Zizzle]

Wow Julie,
That's a long time without answers. I'm so sorry about your reaction to the flu shot. There are a couple members here who identified flu shots as their MC/autoimmune trigger. I won't go near them or any other vaccine now... I think Epstein Barr Virus (mono as a teen) is one of my risk factors, along with celiac genetics, Hep B vaccine, and multiple bouts of antibiotics for mastitis after my first pregnancy. Darn babies!!

Your symptoms sure do sound like MC. Could be celiac too, so make sure you get that answered. I never found out for sure -- I get too sick on gluten to bother with a challenge. Most of us started with low Vit D. Mine was 17 when I was tested. I'm in the 30's now taking 2,000-5,000IU of D3 per day.

I resisted meds for many years, both for the MC, and later for an autoimmune skin rash. In retrospect, I should have accepted steroids earlier just to help calm things down as I transition to an elimination diet. I was gluten/dairy/soy free for 3 years, but it wasn't enough to heal my gut and control my rash. I'm now on the Autoimmune Paleo Protocol and hoping to add a few foods back in soon as I taper off prednisone.

If you do consider steroids, opt for Budesonide/Entocort instead of systemic steroids like prednisone (less side effects). I needed systemic for the skin inflammation.

Welcome!

[springerj]

I feel certain I need to eliminate gluten. It's a very daunting thought though:( Pasta oh pasta how I love you.....

My celiac panel was negative in February. My physician asked if I wanted it repeated. Thoughts on this? Would it change so rapidly especially given my length of time of problems?

Zizzle - I also had mastitis after that pregnancy with the typical course of antibiotics. Interesting.

I will for sure be buying the book. I have a lot to learn and changes to make. I think I will start with gluten and caffeine (the caffeine will probably be harder for me than the gluten). i am a very picky eater to begin with so this will be tough, but if I can feel better and maybe gain a few pounds so every one stops telling me how skinny I am (URG!!!) I will be happy, happy, happy:)

[springerj]

Another interesting thought that maybe you all have discussed. While researching gluten intolerance for my son that was diagnosed with Autism i learned that a lot of people with gluten intolerance actually crave gluten. I would say I always crave pasta:)

[Martha]

Welcome, Julie!

You've had a long, hard road. To have active D with active (in a different sense!) boys is a challenge, because so often we just feel tired because of the disease.

If you crave pasta, you can always get gluten-free pasta. Jovial, Ancient Harvest, and Tinkyada all make passable g-f pasta. My advice on that would be to just go off it all for a while, and only add in the gluten-free stuff after your taste buds have forgotten what the "real" stuff tastes like! It will also give your intestines more time to heal.

Martha

[springerj]

Also, since this just happened I thought I would ask. If I have had a bad D day I will likely crave salt. Anyone else?

[Leah]

Dehydration

[DJ]

Hi Julia, The good news is that you are on the road to getting this under control at 36. I sure wish I could turn back the clock and know then what I know now! Is see that you are ready to get rid of the gluten. The sooner the better!! With increasing awareness of gluten sensitivities, there is increased availability of gluten-free food in markets and restaurants. Some gluten-free products are expensive but it's sure cheaper than medical bills and paying someone else to perform your normal activities. I really like quinoa pasta. It's expensive. Corn pasta is good too but it the texture is a little different. I'm used to it now. Rice pasta is nice but be careful not to overcook it. Millet bread is very good (if you can find it). There are cookie and cake mixes on the market too. I eat more taco shells and tortilla chips now. Be careful to read the labels. Corn starch makes good gravy and thickens stews.
Gluten free Rice Krispies and Corn Chex are easy to find now and they are the same price as the regular product.
I am currently on a business trip in NYC for a week. I got a hotel room with a kitchen and walked to a nearby grocery store. The store isn't very big but it has a wide selection of GF foods.
When my doctor gave me the MC diagnosis, she advised me to "stay away" from gluten and dairy. What does staying away mean? In my opinion, I've been staying away for years. After much research, primarily from this site and reading Wayne's book, I learned that I can't have a little now and then or overlook processed foods that contain just a little. My gut sent me a clear message. I was so sick that I almost have an aversion to the foods that made me sick. I don't miss them and I'm starting to feel better.
So, congrats on your move to a gluten-free life. You might feel LOTS better. I wish you good health.
DJ

[Zizzle]

I was drinking sea water supplements for a while! I have very low blood pressure and was getting lots of dizzy spells. I was on an unrestricted high salt diet. Now that my D is gone, I no longer crave salt.

[Leah]

Oh, and the celiac test will probably be a waste of time…. for two reasons. The first being that the test only proves positive when substantial villi damage has already been done in your intestines. The second being that most of us here test negative ,but are definitely gluten intolerant ( non-celiac gluten sensitivity…. look it up).

if you want to know for sure whether you are producing too many antibodies to gluten, there is a lab in Texas ( Enterolab) that you can send a stool sample to and it will test the level of IgA antibodies. You can also test for dairy, soy, eggs….. and many other top offenders.

Another thing you will want to do is cut the fiber out of your diet for now ( raw fruits and veggies, salad, beans, legumes…). Fiber is too rough on an inflamed intestine. It's like sandpaper on an open wound. Later, down the road, you can test these things back in. I have been able to add some of these foods back in in reasonable amounts, but it took over 6 months to get to that point.

Freshly cooked meats, rice, and cooked veggies is the best way to go for now. Going GF is not as hard as you might think. Once you get use to it, it really isn't too bad. Many companies make very good brown rice pasta. My daughter ( who's 24) makes and eats it exclusively and is happy with it :)

Leah

[tex]

Hi Julie,

Welcome to our internet family. My guess is that due to your relatively young age (especially at the time) it's a safe bet that the GI specialist who performed your first colonoscopy never even considered taking any biopsy samples. Many GI docs still consider the disease to be almost exclusively confined to "older women" (which is hogwash, of course). When biopsies are omitted, the default diagnosis is always "IBS" unfortunately (as if "IBS" actually exists). "IBS" is a fictitious disease invented to salve the egos of GI specialists who can't figure out the proper diagnosis for many patients. IBS apparently stands for I Be Stymied. But it sounds so much better to say, "You have IBS", than to admit that, "I don't have the foggiest idea what's wrong with you." IMO, "IBS" is virtually always an early stage of celiac disease (that doesn't yet meet the diagnostic criteria), or MC at any stage (when the GI doc fails to take biopsy samples), or some other misdiagnosed gastrointestinal syndrome.

I agree with Leah that a repeated celiac blood test probably wouldn't show any different results at this time. Those blood tests have such poor sensitivity that they will not yield a positive result until after the small intestine has accumulated massive damage (at least a Marsh 3 level of damage). It typically takes years for that much damage to accrue. That's why the average length of time between the first symptoms and an official diagnosis of celiac disease in this country is 9.7 years (according to the most recent study based on data collected in 2011).

Gluten is not the only inflammatory food that causes cravings in the brain (due to gluteomorphin peptides in gluten). Casein, the primary protein in all dairy products, contains casomorphin peptides, which tend to have a similar effect on the brain, to make us crave dairy products.

Again, Leah is right on target about the salt craving. It's not surprising that you would crave salt after an extended period of D. The watery D that's associated with MC is known as secretory D. Normally, the colon extracts from the fecal stream, and recycles, water and electrolytes. But with secretory D, the process is reversed, and the colon actually infuses water and electrolytes into the fecal stream. This is why the disease is notorious for causing dangerous levels of dehydration, not only because of the loss of water, but because electrolytes can be depleted to dangerously low levels in a surprisingly short amount of time, sometimes.

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

Tex

[DebE13]

Welcome Julie, I went three years untreated and the D was awful. During this time I knew food had everything to do with how I felt but didn't have the tools to make the right changes. After finding this forum I was able to make some great changes. I agree with Zizzle, stay away from prednisone if you can. I've been on it twice and found the side effects unbearable the second time around. The first time it worked like a charm and I don't recall anything negative. I also don't recall the details of how long I was on it either so that may be a big part of it too. Reluctantly, I went on entocort and am still trying get off of it but am just not ready. It's worth a try if you have good insurance coverage- it carries quite a hefty price tag but can provide relief. I didn't want any meds at all but sometimes there is no choice. Focus on your diet and remind yourself to be patient. Three boys, huh? You must be on the run all the time. I give you lots of credit.... MC (IBS, whatever you name it) is draining.

DJ, I didn't know they made GF Rice Krispies. I thought I saw barley or malt (something like that) on the box last time I looked. Will have to look again.

Leah, you don't look old enough to have a 24yr old!

[JLH]

Julie

You have found the best place in the world for information and support.

I know the Grandmother of a child with Autism that was CURED by eliminating gluten. I will try to find the story on Facebook and post it.

[tex]

DJ, I didn't know they made GF Rice Krispies. I thought I saw barley or malt (something like that) on the box last time I looked. Will have to look again.

Kellogg makes both versions, so you have to be careful, and look for the Gluten-Free label. The last time I looked for it (about a month ago) at the grocery store where I bought a box last year, I couldn't find it. So there's a possibility that some stores may not stock it, because it's a slow-seller. And I also noticed that the price was significantly higher than the original version, so that may also be contributing to the reason why it's a slow-seller.

The GF version is made from brown rice, unfortunately, and I consider that to be a strike against it, for someone who has MC. I only tried one box, and it may have been just my imagination, but it seemed to get soggy faster than the original version, and it seemed somewhat tougher. Of course, it's been over 11 years since I've eaten the original version, so my memory may no longer be reliable. It's also possible that the extra fiber may have made it seem tougher, and/or may have allowed it to get soggy faster. Since they chose to use brown rice (and jack up the price), I'm guessing that Kellogg thinks that the goal of the GF market is to sell to "health-conscious" consumers, rather than addressing a need for gluten-free products for people who are sensitive to gluten (but obviously, my suspicions could be unfounded).

Tex