Ideas for support and how to find an answer

December 3, 2014 12:01 AM

My health keeps getting worse and I feel stuck. Looking for next steps and support ideas to get myself through this after all the tests keep coming back “negative.” I'm out of ideas and at the end of my rope and I'd like to know how to approach doctors and therapists.

What's the best way to proceed given the details below? What questions should I ask my doctor(s)?

I’m looking for a therapist to help cope and help the situational depression because of these health problems. How do I evaluate someone in regards to their understanding of chronic illness?

Any support group ideas (local or online)? I'm in Utah.
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I've posted here before so I'll get to the facts, this is also the last time I plan to post about this here. Email me if you need more details. Anonmefi14 at gmail.

24 yr old female. A life full of stomach problems. Failure to thrive at 9mo followed by predigested formula. Ulcer at 4. Barium swallow and antacids by 11ish. Upper endoscopy and Prilosec RX in 2009. I have mild blood sugar problems that are monitored. On BC pill.

Recent symptoms worsening in past 1 to 2 years suddenly:
Severe cramping and stomach pain. Random increased bowl movements - I was regular up to about 2 years ago even with pain and cramping. Severe nausea, gnawing and burning. Burping and gas. Pain under ribs and through my lower – and maybe upper back.
Headaches, constant fatigue, trouble sleeping, pinpricks/raindrops in vision at times, dizziness, brain fog, inability to concentrate. Heart palpitations, tightness in chest, racing heart. Had 3+ migraines in the past year.

Full elimination diet and cut out corn, gluten, and milk. Overall symptoms somewhat improved with those steps. I need to eat nearly constantly. I drink very little caffeine, low acid diet, no coffee, no alcohol, never smoked.

Tests: all negative or normal
Celiac blood and genetic tests
Complete blood count, potassium, electrolytes
2 thyroid blood tests
Pancreatic function blood test
Magnesium levels
H. Pylori blood test
Upper endoscopy and colonoscopy with 5 biopsies (ouch)
CT scan with oral and IV contrast
(CT was this weekend - also normal, not to mention that oral contrast did a doozy on my stomach and I lost 3 lbs in a day…)

Other results:
Holter monitor - 24 hours - revealed PVCs and palpitations “within normal”
Iron stores were low and since improved with vitamins

Treatments:
40mg (increased from 20) Prilosec daily
Probiotic daily (Culturelle)
Now an antispasmodic as needed - kind of helps the cramping
Zofran as needed for nausea (only a few times a month as it causes constipation.)
Antacids – Rolaids as needed
Changed diet (see above)

I wish I could put into words how much pain I’m constantly in and how much this affects my life. I’m barely able to function and I just want to be able to do my best at work and possibly get a new job. I thought I was getting somewhere until a few weeks ago when I took about 5 steps back but I hadn't changed anything. I just feel stuck with everything coming back normal with no real answers. Thank you all for your time.

posted by anonymous to Health & Fitness (15 answers total)

I just want to mention that I have had many of the same symptoms as you (though no where near as bad) and Prilosec did not help, however 40 mg daily of NEXIUM totally fixed me. It's crazy because the drugs are almost identical but I get complete relief with one but not the other. This was even verified by my HMO doctor as Nexium is not covered by Kaiser and I had to get a special waiver. So something to think about if you have good insurance or $300 to try it for a month.
posted by saradarlin at 12:17 AM on December 3, 2014

Many people have found relief from (what sounds like) IBS symptoms such as yours by taking an SSRI antidepressant. Close to 95% of the body's serotonin is found in the intestines, and regulating the reuptake of that serotonin has been found to help gut issues. It will also probably help the anxiety and depression (racing heartbeat, etc.) you are experiencing due to your symptoms.

Hang in there. MeMail me if you need to chat about poop.

- Another IBS sufferer who had a super bad reaction to a barium contrast
posted by chainsofreedom at 3:50 AM on December 3, 2014 [2 favorites]

I don't know if this is an option for you, but this guy has been referred to as a 'real life Dr House,' and had several articles written about him. Based in NYC.
posted by feckless fecal fear mongering at 4:37 AM on December 3, 2014 [2 favorites]

The antacids are working against the probiotics. Digestive issues created food sensitivities for me. Having a blood test to find the the foods to stop eating saved my life. I was eating peanuts and bananas every day and most days, I was unable to leave my bed. I was in constant pain. Within a few weeks of stopping those two foods, the constant pain was gone. I also wasn't having the bathroom issues. Try to find a doctor who will test for food allergies. Continue with the purest probiotic you can find and be wary of any medications that have binders in them, because they can cause an allergic response. You are only 24. That was the age I was when I got my diagnose and I am now 42 with 3 children and a good life. Recovery happens. It takes going to doctor after doctor to find the one who knows the answer but it will happen.
posted by myselfasme at 5:02 AM on December 3, 2014

None of the tests you've had thus far can detect SIBO, which could explain some of your symptoms. If you're game for more diet tinkering, try a week of a low FODMAP diet. A hydrogen breath test can also detect SIBO, but the upside of the diet is that you're also quite likely to feel better in the meantime.
posted by telegraph at 5:21 AM on December 3, 2014 [1 favorite]

In terms of a therapist, many specialize in working with people with chronic pain. I also know several therapists who are also RNs (many of whom also specialize, as therapists, in working with people with chronic pain). I would seek out someone who lists that chronic-pain specialty, because treating depression is a basic skillset for any therapist while helping with pain issues is not.

Here are the Therapist Finder listings for therapists in Utah who specialize in chronic pain. You can use the menus on the left to narrow it down further.
posted by jaguar at 7:02 AM on December 3, 2014

I feel for you - I suffered from many of the same symptoms for over a year. After putting off going to the doctor for a stupidly lengthy period (while explaining away the increasingly frequent and debilitating stomach/bowel issues to myself as 'food poisoning' or 'late onset lactose intolerance'), I eventually sought help. Almost immediately my doctor figured out I'd picked up giardia or a similar parasitic infection while travelling overseas. I'd never made the mental connection between the stomach upset I'd experienced on my trip and the later pain and illness, as it had taken some time for my symptoms to intensify.

A short course of antibiotics brought immediate, blissful relief. My doc explained that the infection had been preventing my body from absorbing essential nutrients, causing much of the accompanying malaise. A couple of years later I'm feeling much better, though I'm still lactose intolerant and sensitive to chilli (never had issues before the giardiasis). As each month goes by, I'm able to introduce a little more dairy in to my diet. I say all this as giardiasis is easily tested for, and worth asking your doctor about during your next appointment. I wish you all the best for a speedy diagnosis and recovery.
posted by brushtailedphascogale at 7:11 AM on December 3, 2014

By the way, you don't have to travel overseas to pick up giardia. You can get it in the US.
Consider finding an alternative to the BC pill, these might be contributing to your headaches.
posted by mareli at 7:57 AM on December 3, 2014 [1 favorite]

I won't guess at tying together all your symptoms, but in terms of potential things that might exacerbate them: do your probiotics contain inulin? It's a starch sometimes used to jump-start the bacterial growth, but certain IBS patients (often those who respond well to a FODMAPS limited diet) can have profound discomfort from ingesting it. A family member went had a huge turnaround recently when I suggested she switch from the inulin-containing probiotics a medical professional had recommended to ones without any polysaccharide based binder. The ones without are often found (or shipped) chilled, since you're trying to start the bugs alive at a higher # of organisms count without the boost of starch.
posted by deludingmyself at 8:50 AM on December 3, 2014

Oh, and it looks like your probiotic (Culturelle) does contain inulin. Have you taken it successfully before the recent flare up?
posted by deludingmyself at 8:52 AM on December 3, 2014

24 yr old female. A life full of stomach problems. Failure to thrive at 9mo followed by predigested formula. Ulcer at 4. Barium swallow and antacids by 11ish. Upper endoscopy and Prilosec RX in 2009. I have mild blood sugar problems that are monitored. On BC pill.

My official medical diagnosis is "atypical cystic fibrosis." What you are describing is fairly typical for my condition. Most people view CF as a lung condition, but it seriously impacts the gut function and that is a big problem that is well known within the CF community, but just fails to make public media.

The standard test for it is a sweat chloride. IIRC, historically, if you scored 80 or above, you were diagnosed with cystic fibrosis. If you scored below 40, you were normal. Between those two scores was an undefined gray zone. They now call that gray zone "atypical cystic fibrosis." My score (and my oldest son's) was 41.

Cystic Fibrosis also puts one at high risk for Cystic Fibrosis Related Diabetes, which doesn't exactly fit type 1 or type 2 diabetes. I was severely hypoglycemic when I was younger. You might try googling "diabetes and inflammation." I have seen a few articles linking the two.

I got off all the drugs I used to be on and part of what I did was pursued a low acid, very clean diet. CF promotes excess acidity and this is very well established, but it tends to go largely ignored by the medical community as an underlying cause of symptoms. I chose to view it as an underlying cause of symptoms and I worked hard at getting that under control. My gut no longer tortures me. My blood sugar is stable. (My understanding is that high acidity is one of the things that cause inflammation, so getting acidity under control helps get inflammation under control and that's likely part of why my blood sugar is now stable.)

So I will suggest you ask for a sweat chloride, if you haven't yet had that test. And then get the actual results. A lot of doctors are unaware of "atypical cystic fibrosis." I was very fortunate to be at Travis AFB when I was tested in Sacramento and San Francisco. There is a huge regional teaching hospital at Travis, which serves military members from eight western states, and there are a lot of cutting edge medical resources in that general region and I got a cutting edge diagnosis that helped save my life in my thirties. I was horribly sick by the time I was diagnosed. So get the test, get the numbers, do some reading yourself and if doctors say "Oh, it is not (classical) CF. Moving on." don't accept that if the numbers are in that gray zone. Find a doctor who will ID it as ATYPICAL CF if your numbers are high enough.

Once I had that diagnosis, it empowered me to walk into an ER and ask for serious drugs and get them instead of being blown off as some kind of histrionic hypochondriac. It was life changing in the most wonderful way, even before I ended up doing my own research and so on.
posted by Michele in California at 10:58 AM on December 3, 2014 [1 favorite]

All of the above are good ideas! I would ask for a parasite check (with a stool sample) too. I had an amoebic infection once that was causing me all kinds of hell and hadn't even been anywhere exotic!

I second the recommendation to avoid inulin and to get checked for SIBO.

Consider keeping a food and symptom diary. This could help you identify any patterns and might help a doctor understand your suffering.

I'm sorry you're in so much pain. Guts are complicated. Be persistent. I'm rooting for you.
posted by purple_bird at 3:50 PM on December 3, 2014 [1 favorite]

Also, are you still gluten free? How gluten free are you? If going gluten free helped you, then I would operate as if you do have celiac disease. In which case (if you haven't done so already), stop eating out entirely for at least a few months, purge your kitchen of anything that could harbor gluten (everything plastic and wood, sponges, etc.) and double-check with the manufacturer that anything processed you eat is gluten-free. I have celiac disease and thought the purging your kitchen step was overkill, but didn't feel well until I did it. My apologies if you've done all this already.

I get the sense from your question that maybe you're having a hard time getting medical professionals to take you seriously? If that's the case, the phrase "impacting my quality of life" might be helpful and if you can back that up with concrete examples, that would be good too. "I can't go out with friends because I'm in too much pain. I wake up X times a night from pain/ the need to use the bathroom. Etc."
posted by purple_bird at 4:13 PM on December 3, 2014

And I second the difference between Prilosec and Nexium. Nexium is expensive, but there's no comparison between the two drugs. Nexium is awesome. I have Medicare Part D and they didn't want to pay for Nexium, but if your doctor faxes them a letter stating that you've tried Prilosec and others and they failed, they'll pay for Nexium; if you have insurance to help with your medication costs, the letter may work for that, also.

As for the probiotics, I take capsules of acidophilus, but only those that are kept refrigerated as a live culture. Vitamin stores have them, they cost around $10 or maybe a bit more, and each capsule is a powerful little thing. I no longer have to take them every day, but whenever my gut starts acting up again, I go first to Nexium for a few days and then follow through with acidophilus for a week or more.

I do take an SSRI, Lexapro, and I use lactose-free milk - regular milk brands are starting to offer it now and it doesn't cost much more than regular milk and tastes the same. I'm not gluten free by any means. Good sleep matters and sleep deprivation will aggravate my gut like nothing else. Oddly enough, I've found the most helpful thing for sleep, or at least ONE of the most helpful things, to be pajamas. No sleeping in normal clothing. Put on pajamas or clothing dedicated to nothing but sleep and when you get up in the morning change into regular clothing - no hanging around in your PJs all day. I know it sounds stupid, but it has made a big difference in how much sleep I get and how restful that sleep is.

I think doctors simply don't know what to do next when the tests are negative, medications and treatments aren't working, and the patient is still miserable. A huge number of people have irritable bowel disease in one form or another and it just seems to loop around itself and flare up again and again. I imagine it is a degree of cystic fibrosis; I think test numbers for diagnosis of so many disorders should be reworked to show levels approaching the magic number instead of cut-off numbers as they are now. With bone density, for instance, your study shows where you are on the scale between normal bone, osteopenia and osteoporosis. A blood sugar that runs consistently just under the diabetes diagnosis number is watched closely as another example. I think Michele is spot on with her comment on the "almost" CF diagnosis meaning it's CF all right, just not at a blindingly obvious level - at least on the day the blood was drawn; same is true with thyroid tests and many others. If we knew we were running just under the wire for CF, for instance, it would carry over into action to prevent the escalation of the disorder if at all possible by altering one's lifestyle or diet early on, which is what we do anyway, trying everything in order to find something that works.
posted by aryma at 12:27 AM on December 4, 2014

I realize this is rather old, but have you have your B12 levels checked? You have ALL the symptoms of a deficiency -- I mean all of them: stomach pain, pins and needles, exhaustion, palpitations -- and it's exacerbated and sometimes even caused by drugs like Prilosec. Doctors don't always check for it unless you specifically ask. PLEASE have them run this check on you.
posted by Countess Sandwich at 9:13 PM on January 1, 2015 [1 favorite]