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MELMORGAN8's Photo MELMORGAN8 Posts: 17
3/25/07 7:48 P

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thank you for the input. I just really don't have a clue what is going on, but it sounds like it could possibly be a couple of things. I would of never thought of that, so thank you very much.

Missa


 
DOTSLADY's Photo DOTSLADY Posts: 10,018
3/25/07 9:46 A

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Oh thank you LouLouB!

I just shared this story with another SP Friend, and I think it applies here as well.

I was a happy 20-something who befriended a great gal and we became best friends. I'm the godparent to her firstborn - she moved - we cried. We do the best we can to see each other every 5 years or so. We've petered off on the phone calls cause we're busy moms, but I've been there for her during her divorce, she's listened to me moan about all my moves and we'd share "tired" stories. She's tall and thin and exercises all the time. I'm short and fat and always too tired to exercise as I didn't recover well. We both were borderline anemic for the last 20 years.

So after my celiac dx, I tell her to go get checked because of our shared anemia issues, right? (The anemia is a "malabsorption" of nutrients symptom. Vit D is another nutrient to check. My hemoglobin was below the ref. range only once, but hovered just above the range. My friend's usually hovered below range. It was *my* serum ferritin that was low and got me an appt to the gastro.)

Well anyway, she's a single mom with no insurance, so she doesn't check into it. About 4-5 months later she calls me that she's really really tired. Her period won't stop. She hadn't told me she'd been having irregular/horrible periods the past years. They'd stop for months, then start again full force and then some, and so she's thinking she's in menopause (she's 49), just grin and bear it til it's over.

However, the gyno says she's got endometriosis and needs to have an ablation, but can't until she stops bleeding and gets her iron back up. Her hemoglobin is around 8 or 9 which is critical (she can't lift a shirt over her head she's so tired). So she downs iron pills, liver, steaks and it barely nudges: the next iron blood test goes up maybe 1 or 2 tenths. The doctor's concerned, has a hunch and tests her for celiac disease: she's positive! (Her phone call to me was bittersweet.)

Unknown to me is that my friend was also having IBS/fatty stools and a different doctor wanted to do a stool test ... but she thought that was gross and didn't do it! If only we'd have talked more often, I don't know? Anyway, she had the ablation and she's going through some "dry" spells now, which makes her mad cause she's single, ya know? But she's so much better/didn't realize how sick she was! Going gluten-free is hard, but very much better and worth it; and it's better than the gas, bloating, icky periods she USED to have prior to her diagnosis!

So, there's an endo, IBS and celiac diagnosis story! A three-fer!

I'm no IBS expert I can tell you that. I'm just a celiac who has been relieved of bloating, gas, IBS with a gluten-free diet and want to share the info with the world. Some people with UC and Crohn's also respond to a gluten-free diet (I've read where Crohn's is the same in the large bowel as celiac is to the small intestine).

Please do not think that you can self-diagnose and just "do" a gluten-free diet! It's imperative to stay on your current diet with gluten (wheat, rye, barley, oats and all hidden derivatives) so as not to alter a celiac blood panel if you get one. However, if you read people's diagnosis stories, there are always false test results, either way. It's hard! Sometimes the only thing you're left to do is the gluten-free diet for 6 mos to see if it helps.

Doctors erroneously think this is a rare disease. They were taught maybe 1 in 5000 have it. But random blood tests in malls done by a doctor at the U of MD (LouLouB - maybe you could make an appt! - Dr. Fasano - google him) suggest the figure is actually 1 in 133, or I've read even 1 in 100. Only 1 in 4700 have been DIAGNOSED! That's 95-97% who have not been diagnosed. Are you one?

My Nov 25th blog has a link to the U of MD's website where there are video interviews with people who were wrongly diagnosed ... many had IBS symptoms. Some even had unnecessary resections of their colons. It's awful what celiacs have endured. That's why my passion is to share the celiac side of IBS!

Read my blog for celiac diagnosis stories -- they share similarities, yet have their differences. I hope this helps someone!

P.S. Unlike my best friend, I have not been on the pill for 25 years. I did have bloating and constipation leading to my TOM, but then I'd have diarrhea/fatty stools when it arrived or the next day. I'd cramp a bit, nothing major. My periods were always light. 25 years ago they lasted 5 days, then I went to 4, then 3 days skip a day 1 day, now I'm down to 3 light days. Celiacs are different. Since going gluten-free I can say that I'm not bloated ever anymore. No more gas (cute unsmelly toots now) and constipation/diarrhea, etc. Same with my friend.

Here's a question: how many endometriosis sufferers have been on the pill?

Edited by: DOTSLADY at: 3/25/2007 (09:52)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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LOULOUB's Photo LOULOUB SparkPoints: (17,778)
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3/25/07 2:58 A

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Crystal: i used to get suggestions of endometriosis, but that's because I suffer through TERRIBLE periods.

Crystal, Morgan, and eveyone else! . . . here's an excerpt of what Heather Van Vorous has to say on page 3:
"Food allergies, gluten intolerance disorders such as celiac sprue {footnote to this point below), inflammatory bowel dieases such as Crohn's and Ulcerative Colitis, colon cancer, endometriosis, and even ovarian cancer can all mimic the symptoms of IBS and must be conclusively ruled out. Removal of the gallbladder or ileum (the last portion of the small intestine) can also result in chronic diarrhea that may be misdiagnosed as IBS . . . the prescription drug Questran . . .can help this problem."

footnote: Celiac Sprue is a genetic, autoimmune disorder that damages the small intestine. People with celiac sprue cannot tolerate gluten, a protein found in wheat, rye, barley, and possible oats. A simple blood test that measures the levels of gluten-antibodies can diagnose celiac sprue, and the diagnosis can be confirmed with an intestinal biopsy that checks for tissue damage. in the US, the average time between the onset of celiac sprue symptoms and diagnosis is ten years. The only treatment for this disorderis a gluten-free diet.

CRYSTAL0029 Posts: 4
3/25/07 2:12 A

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sorry I wanted to reply to Morgan as well, I'm not a doctor or anything but a friend of mine had exactly the same sypmtoms as you had mentioned and she found out she had endometriosis. I am probably totally off here but when I read your symptoms I thought of her, just a thought I would mention that to you.

CRYSTAL0029 Posts: 4
3/25/07 2:06 A

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I was wondering myself if I may have IBS. Since having my gallbladder removed probably over 5 years ago now I have had diarrhea and I was told by my doctor that it was a common side effect of having a gallbladder removed, I thought that was strange and why did no one tell me this before I had it removed. But I have been reading things and beginning to think that it maybe IBS but since I have read symptoms of celiac disease I'm begginning to wonder if it could be that. My symptoms include diarrhea that is fatty, flatuence, bloating, I do get bruises but my doctor did blood tests and said they were fine. muscle weakness which I have mentioned to my doctor that sometimes my body just seems almost heavy that I have no energy to hardly lift my arms. I noticed it did say weight loss could be a side effect as well unfortunately thats not something that has happened to myself I seem to have gained weight over the past 5 years. Does anyone have any suggestions for me, I have a appt with my doctor in the first week of April and I would like to mention something to her but I am not sure what I should say or ask. It seems I have to basically tell my dr what to look for she doesnt seem to investigate things for me unless I say do u think I may have this or that. Sorry this is so long but I have been struggling with this for so long now I feel like I need to do something about it.
Thanks in advnace

DOTSLADY's Photo DOTSLADY Posts: 10,018
3/25/07 12:15 A

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LouLouB - I looked up Heather's "Eating for IBS" book on Amazon and did the "peek inside the book" link ... she lists celiac in the index, but I can't get to page 3. Page 2 and 4 come up fine. Would you mind telling me what she said about celiac?

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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LOULOUB's Photo LOULOUB SparkPoints: (17,778)
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3/24/07 10:01 P

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Hey Morgan,

The unfortunate thing with IBS is that it's the catchall when doctors don't know what's wrong with you. I had multiple stool samples analyzed, an ultrasound of my galbladder done, and drank a LOT of metamucil before I found a gastroenterologist (GI) who accepted IBS as a treatable condition.

Have you seen a GI doc? If so, see another one until you find one that's willing to really work with you. See if anyone on the IBS team lives in your area and can make a recomendation (i found my doc through a friend with IBS).

Before you see your doctor, really monitor your foods so you know your triggers (mine are greasy, creamy, cheesey foods and the morning. My IBS is exacerbated by stress and my period. No matter what I do, when I have my period I am bloated, gassy, and uncomfortable.)

My doctor has had me on Levbid (hyoscyamine) for years. It's an anti-spasmodic for the digestive system, and it has literally changed my life. I take it three times a day and almost never get attacks anymore.

In the meantime, buy "Eating for IBS" by Heather Van Vorous. (http://search.barnesandnoble.com/booksear
ch/isbnInquiry.asp?z=y&EAN=97815692460
09&itm=1)
She's been suffering from IBS since she was 15 and by the time she got to writing this book she had learned a lot. She's probably more knowledgable about IBS than most GIs.

good luck, and feel free to drop me a line if you want to discuss IBS stuff some more.

DOTSLADY's Photo DOTSLADY Posts: 10,018
3/24/07 10:47 A

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My experience is that my IBS was really celiac disease. Celiac is triggered by pregnancy, chronic stress, virus, or surgery. You also need the genetic predisposition. If you're white/have European heritage, then you more than likely have that predisposition (are all whites from Europe?). Nowadays you don't have to be white though, as it's occuring in all people who eat a glutenous diet.

The gluten protein in wheat, rye, barley and oats wrecks your intestinal lining so that your villi don't absorb nutrients. You don't absorb nutrients, you get stressed easier cause you don't have the B vitamins (or any vitamins/fats) to draw upon for the situation ... or life. That's one reason stress may be a "trigger."

For better references and discussion, I've listed a number of websites that describe the disease (NIDDK), list other diseases associated with it if not diagnosed (incl GI cancers and non-Hodgkin's lymphoma), recipes, food lists, and most importantly celiac diagnosis stories. Many are from people once diagnosed with IBS. See my NOV 25TH blog.

Our guts comprise 70% of our immune system. There is a gut/brain connection. It's good you're trying to get to the bottom of your problem -- doctors use the IBS diagnosis when they don't know what else to do. I don't know if celiac is you, but you really might want to look into it. It could be your answer.

And taking probiotics as TANDAM is, is a great thing to do for your gut health. I've never heard of essential oils, so I hope she lets us know if that's helpful.

I gained 80 lbs on the pill my first year of marriage TANDAM. I was probably undiagnosed hypothyroid even back then. I think there's a connection somewhere in there too. (I've been off ever since and I'm so glad).

P.S. A good place to learn about celiac is "Living Gluten Free for Dummies" by Danna Korn.

Edited by: DOTSLADY at: 3/24/2007 (10:48)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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TANDAM Posts: 14
3/24/07 10:01 A

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I don't really have any advice unfortunately since I haven't controlled my issues. I did just recently purchase some Probiotics & some essential oils that I'm going try taking.

I wanted to post because I was exactly the same way when I was pregnant. Both times. I had no IBS symptoms. I had morning sickness all day and I was constipated here and there but in a totally different way. I can't really explain it. I really think IBS has something to do with hormones. I always say I wish had a "scientific" brain so I could study it. Interestingly enough I was at my worst when I was on the pill years ago. My dr. told me that in no way was the pill causing my problems but as soon as I went off my problems subsided greatly.


LINNIEBETH's Photo LINNIEBETH SparkPoints: (50,160)
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3/24/07 4:26 A

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IBS seems to be a catch-all condition. Aggrivated by stress and/or trigger foods. Constipation (C) and/or Diarrhea (D), with/without bloating, pain etc. As you can see it can be very diverse and highly individual. When it comes to trigger foods, again it can be just about anything, but seems to very individual. Fruits seem to be my worst trigger food, though others can create some degree of problem.

I have found minimizing my fruit intake, and taking Beano before eating really helps. I tend to run on the D side- mostly just very soft. I don't get into the pain part unless I eat too much of a 'trigger'.

Interesting that pregnancy curbed the problem- hormones maybe?? I think that you will find most of us are learning how to live tolerably with it, determine what works best for us, but I don't think it is 'curable" as in, you don't have any problems. Mostly it is learning what triggers you - and learning to minimize it. I haven't tried Digestive Advantage- but have tried others aids, just keep coming back to Beano, restrict most fruits and minimize pork. I can live with soft stools as long as they aren't explosive or combined with bloating and pain.

Good luck, finding trigger foods can be quite a project, and I don't know about learning to cope with stress- others on this site will be more helpful there.

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MELMORGAN8's Photo MELMORGAN8 Posts: 17
3/24/07 12:25 A

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Hello- I believe that i have IBS. I have had it for about 5-6 years now, but have not been treated for it. I have gone to the doctors several times, but nothing was diagnosed, they just put me on different meds, even anxiety medication. I have since taken myself off of it, because i didn't feel like it was doing any good. Everyday i wake up feeling really bloated, gas pains - more in the morning, but gets better as the day goes on, constipated on most occasions, sometimes it can be the other way around, and some days my stomach feels so bloated it makes me nausaus. The only time i did not feel like this was when i was pregnant over 4 years ago, but as soon as i had my daughter, they symptons came back slowly. My stomach always feels uncomfortable, almost like menstrual cramps, and i can feel it on my sides and back. I know some days are better than others, i also know that stress definately makes it worse. Right now i am taking digestive advantage once a day, and i still have the symptoms, but they are not as bad. It is usually the mornings i feel my worst. Any help would be GREATLY appreciative.

Missa


 
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