Just Got Diagnosed With Fibromyalgia

[mythreesuns]

The rheumatologist said that my joint pain was not likely to be related to something like Chrone's or colitis (for which I'm having a colonoscopy next month) because I don't get red, swollen joints.

He gave me the pressure point test, reviewed all my records, took a detailed history, and said this is really what he thinks I have. Diarrhea is very common with FM, apparently.

Well, I'm still waiting to hear from EnteroLab, and the rheumy did not convice me that I do not have celiac or a gluten sensitivity. But he did convince me that if I DID have it, it's really screwing with me at this point! LOL

On the plus side, now I won't be hugely disappointed if the EnterLab tests are negative, like every other test I've had so far.

I'll keep you posted! I should hear back from EnteroLab this week or next.

[Ursa Major]

You know, Toni, most people with fibro have IBS as well. As we all know, IBS is what doctors call it when they haven't got a clue what's wrong. Irritable bowel symptoms are caused by something.

I was also diagnosed with fibromyalgia in 2000. I was on 50 mg codeine contin (sometimes 100 mg, I was allowed to up the dosage when needed, which it often was at night to sleep) twice a day. It's slow, 12-hour-release, so the pain relief would be around the clock. I was in awful pain all the time. Joint pain, muscle pain, terrible backache, headaches...........The codeine barely took the edge off. Often I'd have to supplement with extra strength Tylenol.

When my pressure points were checked, I had 18 out of 18. After the doctor pushed them (and I just about screamed when she did), those spots kept aching for hours after.

I had no energy, couldn't sleep, had bowel problems.......in short, I was a 'typical' person with fibro.

Then, last May I tried a bowel cleanse. Which put me over the edge into full-blown celiac disease. I had chronic, watery diarrhea for six months. Everything went right through me within minutes. At one point I didn't eat anything for nearly a week (other than some crackers, unfortunately, and some tea and broth). The days when I didnt eat anything at all, not even crackers, I had NO PAIN! I stopped the codeine for two weeks and didn't need it.

Once I decided that obviously not eating wasn't helping the diarrhea, and all the tests my doctor ran were negative, I started eating again, and had to start taking the codeine again.

Then, in October of 2005, I ate a slice of rye bread one morning, and was doubled over with terrible stomach cramps within minutes, and running to the bathroom with D shortly after. And a lightbulb went off in my head. I went to the computer and checked celiac disease on the Internet. Bingo, all the symptoms fit. And yes, fibro symptoms and celiac disease symptoms are almost identical. Wonder why?

I stopped eating gluten that day. By the next day the D stopped. The day after that the backache started improving dramatically. Within two weeks (after I also cut out all other lectins) I was off ALL painkillers.

Then, around Christmas, the muscle pains started coming back. My villi were healed enough to absorb nutrients again, and my other intolerances showed up.

By January I had figured out that salicylates were causing the muscle pain (which is excruciating pain, it makes me feel like I'm on fire). I also tested rice and eggs, and gluten, and those were causing the awful joint pain, back pain, drugged feeling, and buckling of my knees when going up or down stairs. As well as D, constipation, stomach cramps, gas, bloating and bowel cramps.

Since I've been off all lectins and salicylates, I haven't used any codeine (other than maybe once a month, when I either did something dumb like eating an orange, or had cc).

I had known about being intolerant to the nightshade family for several years, and had eliminated those about five years ago. Potatoes cause diarrhea, bloating and gas, as well as bowel cramps. Tomatoes cause migraines, and peppers cause an ugly, acne-like outbreak on my face.

I have read other people's stories, too (not just on this site). And I am convinced that fibro is caused by food intolerances. It could be lectins (which includes gluten), or salicylates, or both, often in combination with nightshades.

Why don't you follow the links in my signature to see if any of that fits you? Personally, I don't believe that fibro as a diagnosis is any more valid than IBS. There is a REASON for those symptoms! I never gave up on finding that reason, and refused to settle on the fibro diagnosis.

I accepted it until I could prove what was causing it, because it helped for people to actually believe me that I was sick. Before that, they just called me a hypochondriac and said I was lazy. So, a doctor saying something actually was wrong, and it wasn't all in my head helped with some people.

But please, don't just settle for a fibro diagnosis and managing symptoms! There is a CAUSE for those symptoms. It could be celiac disease, or it could be other intolerances (or both, as with me). Do an elimination diet, you owe it to yourself and your kids.

People with fibro almost inevitably develop other autoimmune disorders down the road, osteoarthritis being a common one. Because they haven't addressed the cause of the fibro, in my opinion.

I hope you figure it out.

[jcc]

The rheumatologist said that my joint pain was not likely to be related to something like Chrone's or colitis (for which I'm having a colonoscopy next month) because I don't get red, swollen joints.

He gave me the pressure point test, reviewed all my records, took a detailed history, and said this is really what he thinks I have. Diarrhea is very common with FM, apparently.

Well, I'm still waiting to hear from EnteroLab, and the rheumy did not convice me that I do not have celiac or a gluten sensitivity. But he did convince me that if I DID have it, it's really screwing with me at this point! LOL

On the plus side, now I won't be hugely disappointed if the EnterLab tests are negative, like every other test I've had so far.

I'll keep you posted! I should hear back from EnteroLab this week or next.

You might be interested in reading this page as it has some interesting info about fibromyalgia and food sensitivity~ and you might find some other things to consider as well. I especially like the one titled What Doctor's Don't Know or Tell Patients ~

Open Original Shared Link

Also look for the page on IBS, too, and maybe B12 deficiency.

Have you had the celiac blood testing done? If not, I'd request it just in case something turns up positive. A negative celiac blood test does not rule out gluten sensitivity, but I think it is worth running the blood tests just in case you'd get an easy positive. I'd also ask to be tested for B12 deficiency, as it can cause symptoms that look like fibromyalgia.

I agree with Ursula that you don't want to settle on a fibromyalgia diagnosis without doing some serious homework~ there are too many other things to consider.

Cara

[AndreaB]

I have also read fibro is associated with other things.....like celiac.

Please do post your enterolab results when you get them Toni. I would like to know what they say.

[Mtndog]

I was diagnosed with FMS back in February but the doctor who diagnosed me said he was convinced that it was secondary to something else (i had already been gluten-free for a year). I woke up every morning feeling like I had run a marathon and then been run over by an 18 wheeler. It was EXCRUCIATING.

Finally with the help of this board I figured out that my Fibromyalgia symptoms were caused by a legume intolerance. I "tested" myself this week. I was stressed out and ate 4 Reese's. Never again. It COULD be a food intolerance.

[mythreesuns]

I am convinced that fibro is caused by food intolerances. It could be lectins (which includes gluten), or salicylates, or both, often in combination with nightshades.

Thanks, Urusula. This is kind of how I feel as well. What this dr did for me was to CONFIRM that something autoimmune was going on. I don't plan on stopping there! LOL

Have you had the celiac blood testing done?

You can see from my sig that I've had the traditional stool and blood tests for celiac, and I've also had an endoscopy for it. All negative.

I should have my results from EnteroLab this week or next--THAT is what I'm banking on. Like I said, the dr didn't convince me that I didn't have celiac, just that if I do, it's rearing its ugly head! LOL

Finally with the help of this board I figured out that my Fibromyalgia symptoms were caused by a legume intolerance.

Thanks...I will be looking into these other intolerances, like Ursula said. It just seems so daunting! I was so hesitant to start the gluten-free diet after already being casein free because of the restrictions. What's going to be left to eat?

Ah, well...I'll figure it out I guess.

Thanks all!

[Ursa Major]

Toni, from what you said I was afraid that you'd just settle with a fibro diagnosis and treat those symptoms. I am glad I misunderstood you there. Mind you, I also felt vindicated when I got the fibro diagnosis. At least a doctor confirmed that something was wrong with me, and it wasn't 'all in my head', as I had been told many times previously.

On the other hand, when I came back a couple of weeks after she diagnosed me, telling her I believe I am hypoglycemic (and I truly have tons of evidence to back up that opinion), she told me I was wrong, and by the way, if I would only start thinking more positive, my 'little aches and pains' would just go away. Needless to say, she was henceforth my ex-doctor. I was just furious. I went back to my previous, clueless but extremely nice doctor, who takes everything I say seriously. Sure, I have to do my own research, but she NEVER tells me I don't know what I am talking about. She'll check out everything I suspect might be wrong. Too bad she was clueless on celiac disease, and so was I until last October. If I would have insisted on testing for it, she would have done it.

[AndreaB]

Hang in there Toni!

There will still be lots left to eat. It's just that we are used to eating a certain way and need to retrain our brains to eating differently. I don't usually eat breakfast anymore since I haven't figured out what else to have. I've moved to two meals a day with a snack if I'm hungry. I don't recommend this for everyone. Some people need to eat more frequently, some less. My children and husband eat three meals. I eat BIG meals too.

I'm waiting anxiously for your enterolab results too.

[mythreesuns]

she told me I was wrong, and by the way, if I would only start thinking more positive, my 'little aches and pains' would just go away.

Yikes!

Reminds me of my GI doc who keeps insisting "There's no chance you have celiac. I tested you for it. Twice. You don't have it." He also believes that my pain is due to colitis or Chrone's. Wonder what he'll say if my colonoscopy comes up roses.....

There will still be lots left to eat. It's just that we are used to eating a certain way and need to retrain our brains to eating differently. I don't usually eat breakfast anymore since I haven't figured out what else to have.

So what do you eat?

Sometimes it's better to know what you CAN eat and build from there, rather than think about all the things you CAN'T eat.

[Lymetoo]

Anyone with "fibromyalgia" needs to also consider Lyme disease. They had my dx wrong all along. Found out I had Lyme, got treated and I'm doing GREAT!

[AndreaB]

So what do you eat?

Sometimes it's better to know what you CAN eat and build from there, rather than think about all the things you CAN'T eat.

I will have leftovers for my big meal late morning, unless there is enough left for the whole family. Other times I have rice with or without eggs and sometimes leftover meat, nuts, mushrooms. I'll also have some fruit. If I have a snack, it's something quick like fruit. I usually keep my fruit and veggies in separate meals but find that it doesn't always work out that way. Since I'm trying to up my fruits and veggies (I don't eat enough of those) I find I have to combine them at times.

I don't really have a lot of restrictions considering how many different foods there are.

[CarlaB]

I am having acupuncture for adrenal fatigue, and when I was reading about it I came across reports that it's proven to be effective against fibromyalgia. It certainly is helping me! Weird, I know! Even the NIH says it works on fibro, and they don't really know why.

[mythreesuns]

Anyone with "fibromyalgia" needs to also consider Lyme disease. They had my dx wrong all along. Found out I had Lyme, got treated and I'm doing GREAT!

Glad you're doing well. My primary dr already ruled out Lyme...twice!

[3blessed]

I was diagnosed 8 years ago with celiac disease. I have had terrible joint pain off and on. Now I have it all the time. Do any of you joint pain sufferers have any ideas on what I should do next to figure this out?

[Mtndog]

Yikes!

Reminds me of my GI doc who keeps insisting "There's no chance you have celiac. I tested you for it. Twice. You don't have it." He also believes that my pain is due to colitis or Chrone's. Wonder what he'll say if my colonoscopy comes up roses.....

So what do you eat?

OMG- too funny (not the experience but the way you phrased it). I had the same response from my first two GI's. It could be Celiac, it could be Chrohn's and it could be colitis. But if the Chrohn's and colitis get ruled out (and even if they get ruled in) you might want to TRY going gluten-free for a time to see if it helps at ALL. That's basically what I did and it made a BIG difference right away (not true for everyone).

Hmm... what do I eat? Yesterday I had leftover pot roast au jus with zuchinni, summer squash and roasted potatoes. For dinner, I had chicken stirfried with some onions and spices and white rice.

Today I had a glutenfree rice crust pizza from Amy's Kitchen (their gluten-free pizza is now made in a dedicated facility), and 2 Pamela's gluten-free Pecan Shortbread cookies.

I haven't been cooking lately as we had to move in with the in-laws but some of my favorite things are chicken, veggies, rice, spices, Mexican aything on corn tortillas, Thai and Indian curries, flourless chocolate cake, Haagen Daaz ice cream.

I actually love the gluten-free diet and once I figured it out (took awhile but I'm slow ) I started cooking up a storm. My husband only eats gluten when we go outr becase he likes being gluten-free too.

You'd be surprised! Lots of options if you want to try it out. Ask away!

[Matilda]

...

[Ursa Major]

I was diagnosed 8 years ago with celiac disease. I have had terrible joint pain off and on. Now I have it all the time. Do any of you joint pain sufferers have any ideas on what I should do next to figure this out?

What caused my joint pains was lectins (which includes gluten). I suggest you follow the lectins link in my signature, and eliminate all lectins for now, to see if your joint pain won't improve.

Thanks, Matilda. I think grains are the highest in lectins. Gluten containing grains, rice and eggs cause the worst joint pains (and the worst gastro reactions) for me, closely followed by potatoes and dairy. I am still not sure about beans. I might be able to eat them again at some point.

But if you read through the whole thing, you'll know that everybody is different, and that people rarely are intolerant to all the lectin groups for life. Of course, we know that for us, gluten will certainly be for life, though.

I've tried eggs a couple of times, and it wasn't pretty. My naturopath just said last week, that it's way too early to try testing those things (rats ).

Now I am thinking it may be just the egg whites. I put just egg yolks into cookie dough the other day and ate some cookies, and I think it was fine.........no stomach ache immediately after eating them, or any of the usual egg reactions the next day, either (knock on wood ).

[Mike1972]

You know, Toni, most people with fibro have IBS as well. As we all know, IBS is what doctors call it when they haven't got a clue what's wrong. Irritable bowel symptoms are caused by something.

I was also diagnosed with fibromyalgia in 2000. I was on 50 mg codeine contin (sometimes 100 mg, I was allowed to up the dosage when needed, which it often was at night to sleep) twice a day. It's slow, 12-hour-release, so the pain relief would be around the clock. I was in awful pain all the time. Joint pain, muscle pain, terrible backache, headaches...........The codeine barely took the edge off. Often I'd have to supplement with extra strength Tylenol.

IBS is also called psychogenic diarrhea because between 70% of patients with IBS are healed after taking a placebo (like sugar pills/ gluten free diet).

Here are some links to the causes of IBS:

1.The placebo effect in irritable bowel syndrome trials: a meta-analysis.Patel SM, Stason WB, Legedza A, Ock SM, Kaptchuk TJ, Conboy L, Canenguez K, Park JK, Kelly E, Jacobson E, Kerr CE, Lembo AJ.

Division of Gastroenterology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA.

BACKGROUND: Despite the apparent high placebo response rate in randomized placebo-controlled trials (RCT) of patients with irritable bowel syndrome (IBS), little is known about the variability and predictors of this response. OBJECTIVES: To describe the magnitude of response in placebo arms of IBS clinical trials and to identify which factors predict the variability of the placebo response. METHODS: We performed a meta-analysis of published, English language, RCT with 20 or more IBS patients who were treated for at least 2 weeks. This analysis is limited to studies that assessed global response (improvement in overall symptoms). The variables considered as potential placebo modifiers were study design, study duration, use of a run-in phase, Jadad score, entry criteria, number of office visits, number of office visits/study duration, use of diagnostic testing, gender, age and type of medication studied. FINDINGS: Forty-five placebo-controlled RCTs met the inclusion criteria. The placebo response ranged from 16.0 to 71.4% with a population-weighted average of 40.2%, 95% CI (35.9-44.4). Significant associations with lower placebo response rates were fulfillment of the Rome criteria for study entry (P=0.049) and an increased number of office visits (P=0.026). CONCLUSIONS: Placebo effects in IBS clinical trials measuring a global outcome are highly variable. Entry criteria and number of office visits are significant predictors of the placebo response. More stringent entry criteria and an increased number of office visits appear to independently decrease the placebo response.

2. A controlled crossover study of the selective serotonin reuptake inhibitor citalopram in irritable bowel syndrome.Tack J, Broekaert D, Fischler B, Oudenhove LV, Gevers AM, Janssens J.

Department of Internal Medicine, Division of Gastroenterology, University Hospital Gasthuisberg, Leuven, Belgium. jan.tack@med.kuleuven.ac.be

INTRODUCTION: Selective serotonin reuptake inhibitors (SSRIs) are frequently used in the treatment of irritable bowel syndrome (IBS) although evidence of their efficacy is scarce. AIM: Twenty three non-depressed IBS patients were recruited from a tertiary care centre and included in a crossover trial comparing six weeks of treatment with the SSRI citalopram (20 mg for three weeks, 40 mg for three weeks) with placebo. IBS symptom severity was the primary outcome measure, and depression and anxiety scores were also measured. The effect of acute administration of citalopram on colonic sensitivity and on colonic response to feeding was investigated as a putative predictor of symptomatic response to the drug. RESULTS: After three and six weeks of treatment, citalopram significantly improved abdominal pain, bloating, impact of symptoms on daily life, and overall well being compared with placebo. There was only a modest effect on stool pattern. Changes in depression or anxiety scores were not related to symptom improvement. The effect of acute administration of citalopram during a colonic barostat study did not predict clinical outcome. Analysis of the first treatment period as a double blind parallel arm study confirmed the benefit of citalopram over placebo. CONCLUSIONS: The SSRI citalopram significantly improves IBS symptoms, including abdominal pain, compared with placebo. The therapeutic effect is independent of effects on anxiety, depression, and colonic sensorimotor function.

[Scott Adams]

Hello Mike1972:

Sure, the placebo effect is real, and works in a number of ways. You can probably even convince some people with terminal cancer that their pain is less by giving them a sugar pill--but that doesn't mean that they don't have cancer now does it? If you had spent a little more time digging in medical articles you might have found some of these--studies that show that Irritable Bowel Syndrome (IBS) can result from undiagnosed celiac disease, and that all patients with IBS should be screened for celiac disease:

At Least 4.6% of People Diagnosed With Irritable Bowel Syndrome Have Undetected Celiac Disease

Screening Irritable Bowel Syndrome Patients for Celiac Disease Found to be Cost Effective

These articles are more relevant to people who are in a forum for celiac disease.

Take care,

Scott

[Mike1972]

Hello Mike1972:

Sure, the placebo effect is real, and works in a number of ways. You can probably even convince some people with terminal cancer that their pain is less by giving them a sugar pill--but that doesn't mean that they don't have cancer now does it? If you had spent a little more time digging in medical articles you might have found some of these--studies that show that Irritable Bowel Syndrome (IBS) can result from undiagnosed celiac disease, and that all patients with IBS should be screened for celiac disease:

Take care,

Scott

I would go even farther and say that some people (a small minority) with terminal cancer have been healed by giving a placebo. Mostly because the patients mental state influences the immune system and stress leads to a reduction in the immune response which allows the cancer to spread. Giving a placebo relaxes these patients and gives them hope which restores the immune system to its normal levels and helps fight off the cancer.

As much as 30-50% of the beneficial effect of any medication/diet/or medical intervention is due to the placebo effect.

[mythreesuns]

CONCLUSIONS: The SSRI citalopram significantly improves IBS symptoms, including abdominal pain, compared with placebo. The therapeutic effect is independent of effects on anxiety, depression, and colonic sensorimotor function.

Um, not true in my case. I have been on an SSRI for anxiety, and it did not affect my "IBS" in the least. All IBS means is that the dr doesn't know why you have diarrhea/constipation, not that its "psychogenic."

[Scott Adams]

So we agree that the placebo effect is real, although I disagree with your assessment of how great this effect is. Unfortunately based on the limited information given by the people who posted in this thread there is no way for you to jump to conclusions and claim that what they are experiencing is mental, which is what you are implying here. When you make claims that sound authoritative like "As much as 30-50% of the beneficial effect of any medication/diet/or medical intervention is due to the placebo effect," you'd better be prepared to back this up with some scientific evidence and give citations to medically published studies that support your claims.

IBS can have multiple, non-mental causes, including bacterial overgrowth of the small intestine (SIBO), celiac disease, food intolerance, etc. In fact, this just came out today:

Small Intestinal Bacterial Overgrowth and Irritable Bowel Syndrome: What Is the Association?

Question

What is the evidence for the role of small intestinal bacterial overgrowth in the etiology of irritable bowel syndrome?

Expert Response from Yehuda Ringel, MD

Assistant Professor of Medicine; Staff Physician, Department of Medicine, University of North Carolina at Chapel Hill

Several studies over the last few years have suggested an association between abnormal hydrogen breath test findings and irritable bowel syndrome (IBS), and proposed small intestinal bacterial overgrowth (SIBO) as a potential etiologic factor in the disorder. In 2 early provocative studies, Pimentel and colleagues,[1,2] from Cedars-Sinai Medical Center in Los Angeles, California, reported that 78% to 84% of their IBS patients had abnormal lactulose hydrogen breath test results compared with 20% of patients in a control group (P < .01). Furthermore, neomycin treatment resulted in significant improvement in their patients' symptoms (eg, 35.3% bowel normalization in the treated group compared with 13.9% in the placebo group; P < .001), and up to 48% of eradicated subjects no longer met the Rome criteria for IBS. Although these studies were first criticized because of patient-selection bias and the low accuracy of lactulose breath testing in defining SIBO, several studies with glucose breath testing have also shown a higher prevalence of SIBO in patients with IBS. For example, a recent retrospective epidemiologic case-control study demonstrated positive glucose breath tests in 31% of patients with IBS vs only 4% in the control group (odds ratio [OR], 2.65; 95% confidence interval [CI], 3.5-33.7; P < .00001).[3] These results support Pimentel and colleagues' early findings of an association between IBS and SIBO. However, other studies have shown a much lower prevalence of SIBO in patients with IBS. In a recently reported retrospective study of patients who were referred for glucose hydrogen breath testing for SIBO, only 11% of 113 patients who met the Rome II criteria for IBS tested positive for SIBO, suggesting that IBS symptoms are often unrelated to SIBO.[4] On the basis of currently available data, the contributing role of SIBO in the pathophysiology of IBS remains controversial, and the large variation in the prevalence of SIBO in IBS (10% to 84%) indicates the problematic state of this research, particularly with regard to the accuracy of breath testing in detecting SIBO in patients with altered (particularly accelerated) gastrointestinal motility.

Further epidemiologic studies and placebo-controlled clinical trials aiming at eradicating SIBO are necessary to clarify the true impact of SIBO on IBS symptoms. With regard to the latter, several small treatment trials have been reported and demonstrated improvement in IBS symptoms with antibiotic (eg, neomycin and rifaximin) therapy.[2,5] However, the results of a larger multicenter study with rifaximin are awaited with anticipation.

From a clinical standpoint, until this issue is clarified, clinicians should consider SIBO in an IBS patient with typical symptoms (eg, bloating, distention, and diarrhea), as well as in patients with these symptoms who do not fulfill the diagnostic criteria for IBS.

Posted 09/18/2006

References

1. Pimentel M, Chow EJ, Lin HC. Eradication of small intestinal bacterial overgrowth reduces symptoms of irritable bowel syndrome. Am J Gastroenterol. 2000;95:3503-3506. Abstract

2. Pimentel M, Chow EJ, Lin HC. Normalization of lactulose breath testing correlates with symptom improvement in irritable bowel syndrome. a double-blind, randomized, placebo-controlled study. Am J Gastroenterol. 2003;98:412-419. Abstract

3. Lupascu A, Gabrielli M, Lauritano EC, et al. Hydrogen glucose breath test to detect small intestinal bacterial overgrowth: a prevalence case-control study in irritable bowel syndrome. Aliment Pharmacol Ther. 2005;22:1157-1160. Abstract

4. Harris LA, Crowell MD, DiBaise JK, Olden K. Is small intestinal bacterial overgrowth (SIBO) really prevalent in irritable bowel syndrome (IBS)? Am J Gastroenterol. 2005;100:S336-S337.

5. Pimentel M, Park S, Kong Y, et al. A 10-day course of rifaximin, a non-absorbable antibiotic, produces a durable improvement in all symptoms of irritable bowel syndrome: a double-blind randomized controlled study. Gastroenterology. 2006;130:A134.

Suggested Readings

* Lee HR, Pimentel M. Bacteria and irritable bowel syndrome: the evidence for small intestinal bacterial overgrowth. Curr Gastroenterol Rep. 2006;8:305-311.

* Lin HC. Small intestinal bacterial overgrowth: a framework for understanding irritable bowel syndrome. JAMA. 2004;292:852-858.

In any case, I presented with classic celiac disease symptoms, and unfortunately for me my doctor sounded exactly like you do and tried to convince me that it was all in my head--this from a "good," young, well-schooled doctor in San Francisco. His approach caused me to waste another few years of my then unhealthy life trying to get diagnosed--years of unnecessary suffering, not to mention the increased danger to my life. So rather than throw out the placebo effect, something that as far as I'm aware doctors do not experiment with on patients who visit them in their office who present with real symptoms, why not actually test for real things that can cause those symptoms?

I had to read books on my own to discover what celiac disease was, then convince my doctor who very reluctantly tested me for it (I'm sure the placebo effect was going through his mind too). My blood tests and biopsy revealed advanced celiac disease, and subsequent genetic testing shows that I am both DQ2 and DQ8 positive--all in my head eh?

The fact that I was my doctor's first celiac disease diagnosis in a busy SF practice tells me that he is a totally irresponsible doctor--he was completely missing the boat here. Since then, thank god, he's made many diagnoses, and now tests for it for many reasons that seem totally unrelated (but he still finds it there too), and his transformation has only come from me hassling him about it each time I visit.

To make a long story short, my case is similar to those of most people who end up here, and telling people on this board that their symptoms are in their head is neither productive nor helpful to them, and may actually be harmful in some cases.

Take care,

Scott

I would go even farther and say that some people (a small minority) with terminal cancer have been healed by giving a placebo. Mostly because the patients mental state influences the immune system and stress leads to a reduction in the immune response which allows the cancer to spread. Giving a placebo relaxes these patients and gives them hope which restores the immune system to its normal levels and helps fight off the cancer.

As much as 30-50% of the beneficial effect of any medication/diet/or medical intervention is due to the placebo effect.

[Lymetoo]

Glad you're doing well. My primary dr already ruled out Lyme...twice!

If you weren't tested through Igenex Labs in CA, then you could still have it. That happens to thousands of people every year.

[Mtndog]

Just wanted to say thank you Scott for jumping in and making some IMPORTANT and SUPPORTIVE claims. It is much appreciated.

If everything was "all in my head" I would have thought the numerous medications I was on, both psych and physical, would have "cured" me by now. Somehow they never did

[mouse]

I also want to say thank you to Scott for jumping into this thread. I was treated like Scott for most of my adult life. I, unlike Scott had never heard of Celiac. So as my GP was trying to find the words to tell me to see a shrink, the "light bulb went off" (his words). He later said I was 2 weeks away from no recovery as I was so far gone. He thought I was Bulimic or Anorexic because of the severe weight loss. People asked me if I now went to a different doctor, but like Scott, I chose to stay and educate him and his PA to the best of my limited abilities. He has now diagnosed more then 60 other Celiacs since me. And I can tell you that a placebo would not have healed all of the damage that has occured in my body, from being an undignosed Celiac.