(no subject)

[the_rck]

I'm worried about my sister-in-law, Scott's sister. She's pursuing ever more restricted diets, restricted in terms of what foods she can eat not in terms of calories (though restricting calories results from what she's doing). She's convinced that, if she can just hit on the right diet and stick with it, her health problems will disappear. Never mind that half her current problems probably come from what she's doing with her diet.

Basically, about two years ago, she started feeling like there was a lump in her esophagus when she swallowed. Her doctor referred her to a specialist who concluded that it was reflux and did an endoscopy which showed no issues. The specialist recommended medication for the supposed reflux.

My SIL didn't like the idea of taking medication, so she started pursuing alternative medicine remedies. I think she tried acupuncture first. While she was there, she met someone who claimed to be able to tell her what the problem foods were by having her hold various foods while this person measured electrical flow in her arm. This resulted in a list of foods to avoid.

The lump feeling didn't go away.

She started pursuing other alternative treatments. I'm not sure what all she's tried, but the latest person first told her that she had a yeast and bacteria overgrowth. For this, she went on an even more restricted diet. Now this person has told her that she has mold and toxins in her blood (they apparently took and analyzed a sample). This results in an even further restricted diet. She can't eat most grains, can't eat dairy, can't eat meat more than a day old, can't eat anything fermented, aged or dried, can't eat sugar/honey (the last I heard coconut sugar was maybe okay). I think there's a bunch of fruit on the no list, too. She's off all nuts and legumes since the previous set of restrictions.

She was relatively thin to begin with, and she's been steadily losing weight. With the new diet, she's likely to lose more weight simply because there's almost nothing she can eat.

She says that, in January, she will start low dose allergy treatments to address all of these 'allergies.'

I'm worried about her. I think she's going to extremes for what started as a small problem. Of course, my view may be influenced by the fact that I take the medications she was so terrified of and likely will every day until I die. They're really not that big a deal. I also wonder if reflux really is the problem. It might be. The whole thing might also be psychosomatic or be a symptom of something else. She just seems to have fallen down the rabbit hole into ever more ridiculous extremes. Of course, I'm not her. I'm not in her body. For all I know the 'lump' is horrifically painful. She also has to make her own choices about who she listens to. I just worry that she's destroying her health this way.

Comments

[retsuko]

That sounds... very worrying, almost like an eating disorder. Are you the only one who's worried? It sounds like it might be time for a family member to gently intervene.

[the_rck]

I know her mother-in-law is worried. I'm just not sure how much influence she has-- Scott's sister may dismiss her because she's overweight and eats whatever she wants to. (And she's likely to dismiss me because I'm overweight and because I take a lot of meds.)

Her parents, unfortunately, are big into alternative medicine and seem to be swallowing all of this as readily as she does. They do homeopathy instead of things like flu shots. Flu shots are apparently evil. Scott's mother is eating gluten free, and I'm not sure she has any medical reason to. Scott's parents both take massive numbers of vitamins, six to ten at every meal. The astonishing thing is that Scott's mother was an RN.

[retsuko]

I just...

What the...

OMG.

Ahem. Wow. That's a lot of difficult stuff right there. (As is probably obvious, I have Opinions, but I will keep them to myself.) I wish I had better advice, but it honestly sounds like you may be better off letting her do her own thing, even if it sounds tremendously damaging and dangerous. :(

[heavenscalyx]

She's totally been taken in by snake oil salesmen. That whole "bacterial and yeast overgrowth" crap has been running around the alternative medicine circles for at least 30 years now, and there are jackasses who will take some of your blood and project the scene from their high-powered microscope on a screen. One tried it on me (the boyfriend of an alternative medicine type I was experimentally seeing), and said, "That right there is a yeast cell! In your blood!" And I said, "Funny, that looks a lot like a lymphocyte to me." He really really didn't like having an actual biologist in his office.

And she is showing signs of profoundly disordered eating. I hope that she stays this side of critical low mass, but probably her doctor wouldn't recognize the eating disorder in progress until she comes near dying from it, and she certainly won't recognize it -- she has the best excuse for denial in the world, this other problem.

All this to say, "Yes, your concern is entirely valid and it sounds very disturbing to witness!"

[the_rck]

Well, I'm pretty our SIL in Seattle, the vascular surgeon, is worried, but she hasn't seen Scott's sister in over a year, and Scott's sister wouldn't listen to her then. I know that Scott's sister's MIL is worried. She said as much at Thanksgiving, but I doubt Scott's sister will listen to her either because she's fat. (Just as she's unlikely to listen to me because I'm fat and take evil, evil medications.)

I wonder if Scott's sister's husband would listen to his mother or to anybody else about how worrying this is? I don't know if she'd listen to him either (she's been concerned for years that he doesn't eat what she considers to be sensibly), but he's in a better position to push her to get real help.

Scott's parents aren't going to be much help, both because they're wrapped up in concerns over Scott's father's health and because they tend to believe in this sort of stuff. They've turned to homeopathy in preference to flu shots, for example.

[heavenscalyx]

Unfortunately, people with eating disorders have really poor insight into their condition, and are unlikely to take any advice from anyone, fat or thin. Even when a medical professional explains their condition to them, they're unlikely to do anything on their own. I think it's worse when it's an adult who cannot be dragged nonconsensually into treatment unless they're actively dying.

Still, as you say, her husband probably has the best chance of pushing her into getting help. Maybe you could talk to some of the other people who are concerned, and all of you could lean on her husband in ways that might give HIM insight into the problem. He may not even have noticed an issue at this point. :P

... That reminds me, I still need to get a flu shot!

[loligo]

The weight loss is definitely concerning... I'm eating what many people would consider to be a pretty restrictive diet in terms of options (basically "paleo" plus occasional rice and beans), but I'm making sure to eat A LOT in terms of quantity and I'm also making sure I hit all the nutrients that might be tricky. Like, since I've developed a massive dairy allergy, I make sure to eat sardines with bones for the calcium, even though they're kind of gross. Once I started eating this way I rapidly lost 10-12 pounds and then stabilized at what had been my weight for years before I had kids.

When someone makes a major dietary change, even one that is actually good for them, it's not uncommon to have 2-3 weeks of feeling wonky as the body retools and makes more of some enzymes and less of others. But if there's no significant benefit by week 4 or 5, you really have to question whether this was a good change or not. If she's been doing this for more than a month and she's just getting sicker, yeah, I'd be worried.

[the_rck]

I'm more concerned about the reasons why she's changed her diet so radically. I don't think they add up. She's been slowly cutting more and more foods over the last two years, and nothing has helped the original problems. Instead, she's been feeling steadily worse and thus more prone to think that there's something major wrong that she can fix if she finds the magic combination of foods.

Yeast and bacterial 'overgrowth' sound fishy to me. The mold/toxins in the bloodstream sounds even fishier. I thought the testing for allergies by holding foods was ridiculous but mostly harmless, but she's gone steadily deeper into territory I'm dubious about.

If she were feeling better with the changes in diet, that would be one thing, but she keeps coming up with more and more alarming diagnoses that each require further contortions and more consultations with the alternative medicine practitioner she's dealing with.

And she can't get calcium from sardines-- She's no longer eating meat or fish more than a day old (though where she expects to get meat freshly butchered, I really have no idea). I suspect sardines would also come under fire for being 'preserved.'

[ramenkuri.livejournal.com]

Oh my. That is worrisome! I don't believe that person who measured electrical flow at all. Has she taken regular allergens tests?
I wish she'd see another specialist to get a second opinion. And consulting a nutritionist sounds like it would be sensible too, but it sounds like she doesn't trust traditional medicine already so I doubt she's open to it. That is problematic. Is she open to discussing actual health studies? Or does she automatically discount them?

[the_rck]

She believes that regular medicine is behind on picking up on all of the alternative medicine techniques that really do work (which is all of them). That means that she's not going to believe any studies she sees. I'm not sure how much a second opinion would help (or if her insurance would cover it). If the conclusion was, once again, that she should take medication, she'd reject it again.

I don't believe she's had a regular allergy test. She is now convinced that she's allergic to a host of things she never was before. She says that she's going to start low dose allergy therapy in January. I don't trust, however, that she's doing it with somebody reputable.

[leorising1959.livejournal.com]

I've fallen down the natural-medicine rabbit hole your SIL has wandered into. I've been through many of the procedures you've mentioned. NAET (the electrode thing) was the one of the weirdest, and I never trusted it or used the info from it (luckily it was free. My friend is a naturopath.) I've had the testing and the diets for "bacterial and yeast overgrowth". I've had my hair tested for micronutrient deficiencies. Never helped. I've taken cortisol and phyto-equivalent estrogen cream. I've had my lymph drained and high colonics. I've been Rolfed. I've done psyllium seed cleanses. I don't know how many stool samples I've submitted for parasite evaluation (all negative.) I tasted Kombucha and decided it was too gross for me. Someone tried to Rebirthing with me, but it was a little too whacky and I resisted it -- almost laughed in her face. (The "rebirther" responded with a look of infinite sadness -- "Oh, I'm so sorry you can't accept this gift." Pfffff. So very strange.)

I'm sure I've forgotten as much as I've written here. When you have apparently insoluble problems, you can spend a lot of time in this "natural medicine" community, getting jerked around by first one theory and then another, with no one coming up with a true diagnosis or a useful treatment plan, just riding their own little hobby horses and collecting their big fees.

Believe me, I've had a lot of people tell me a lot of odd things and make a seemingly plausible case for each one. I tried them until I was convinced they would not work, then I quit. This pissed off several practitioners, who urged me to "hang in there, it takes time to work" -- hard-sell tactics. I know my body and I might be gullible, but I don't like to send good money after bad.

Things that have worked for me include massage, cranial-sacral therapy, meditation, and Dr. Wahl's nutrition protocol. I've had acupuncture and chiropractic and believe they are effective, just not for my particular set of problems. Of course, my issues are not the same as your SIL's.

I'm not sure how useful this information is to you. I might suggest that she get a second MD's opinion on the lump. Has she had her thyroid evaluated? Also, what she is feeling has a particular name in Chinese medicine: "plum-pit sensation". It's the feeling that you're trying to swallow past a plum pit lodged in your throat. There are specific therapies for it that are effective, so a visit to a (very good) acupuncturist might be in order.

I hope your SIL finds her way out of all this. The NAET therapy can be especially tedious and possibly costly, so I hope she wakes up soon. You're good to be concerned about her.

[the_rck]

I just worry that she's putting her health in danger with all of this. The problem she started with is still there, and she's been feeling steadily worse as she tries each new restriction. She just seems to be convinced that, if she can hit on the magic food combination, she'll suddenly feel better. She's not tying feeling worse to the steps she's taking to try to feel better.

The lump she feels isn't in her throat. It's considerably lower, down near her stomach. I don't know if she's had her thyroid evaluated. I'll ask.

[leorising1959.livejournal.com]

Ah, that sounds more like reflux, then. Or a hernia. Thyroid is up by the voicebox, so that wouldn't be it. Hm.

If she were my SIL, I would at least gently remind her that she's trying to feel better, not worse. Usually if a food intervention works, one feels better pretty quickly. Her practitioners might be telling her that she's "detoxing", though, and that it "takes time", and that she has to suffer through it. I hope she doesn't buy that line of BS for very long.

I wish her much good luck, and hope she feels better soon.

[evalerie.livejournal.com]

That does sound alarming.

I've seen a lot of otherwise-sensible people go in for muscle testing, and they swear that it works, but I have read nothing about it that makes any sense, so I cannot imagine how it could possibly work. However, the good thing about it is that the same people who do the muscle testing can also "clear" the allergies that they diagnose, making it safe for their patients to eat the forbidden foods once again. So hopefully your sister-in-law is seeing someone who will clear the allergies too, and not just diagnose them.

I'm familiar with that lump in the throat that won't go away. I'm sure it could be a thousand different things, with different causes, needing different treatments. For me, the things that helped are (1) a daily dose of digestive enzymes and probiotics, and (2) getting rid of yeast overgrowth in my body.

In more detail: Not all digestive enzymes work equally well. When I asked my doctor if I should try taking digestive enzymes, she suggested starting with the fancy expensive ones, and then, if that helped, working my way down to the least expensive ones that worked. I ended up finding that I did need the expensive ones, but that I can take just one tablet a day instead of one with each meal. What I'm taking is Enzymedica Digest Gold with AT-Pro. Another recommendation for digestive enzymes is to look for a brand that doesn't contain anything you're allergic to -- like for example the enzyme bromelain is made from pineapples, so a person allergic to pineapples would want to avoid it.

Ditto for not all probiotics being equal. I'm currently taking a "Women's 50 Billion" store-brand probiotic from Arbor Farms.

I find that the enzymes make me feel about 80% better, and the probos take it to about 95% or more.

I think digestive enzymes in particular could be helpful to your sister-in-law, because they break down foods that a person is sensitive to into smaller components, which can be less allergenic.

Yeast overgrowth in my body was more of an issue when I was breastfeeding. When the yeast in my body dies, it gives off gas, which for me often lodges in a way that feels like a lump in my throat or chest. It will sit there for hours, then finally disappear with a burp, only to reappear soon after. I've fairly successfully reduced the amount of yeast in my body by cutting ALL refined sugar out of my diet. I used to allow myself only one sweet snack, in a small sized portion (not large), once a week. And I generally ate veggies instead of fruit. Persistence at a very low sugar diet over a period of months finally did kill off enough yeast to reduce the problem. Note that the first few days on a low-sugar diet can cause a lot of yeast to die off all at once, making gas and other symptoms much worse. That should only last a few days at most.

I don't know if *any* of these things are what your sister-in-law has, though; it's just what's worked for me, and it sounds like she may have some similar issues.

Anyway, this is more than I would normally post on the open Internet, but I thought it might be useful to your sister-in-law. You are welcome to forward it to her (not my comments about muscle testing for allergies, but the parts about digestive enzymes, probiotics, and yeast overgrowth), if you think that would be appropriate. I'd also be happy to talk on the phone with her, or by e-mail. I do a lot of helping parents to figure out their kids' food sensitivities and helping people on the Gluten-Free Ann Arbor list to figure out various digestive and other issues, so I think I could be a useful resource. Also, she is welcome to join the Gluten-Free Ann Arbor e-mail list (even though she's not technically in Ann Arbor, I think we probably are the nearest gluten-free support group to her) and ask there for advice. The group is good at getting people brainstorming ideas for what might help, and sharing info about what has helped them in the past. There's also an awesome doctor there who really "gets it" about digestive problems. He usually doesn't post anything, but occasionally someone gets lucky and he pops up with a brilliant insight.

[the_rck]

I'd feel better about all of this if she were feeling better. Instead, the problem she started with is still there, and she's been feeling steadily worse and worse. The worse she feels, the more convinced she is that there's something in her diet causing the problem. She cut all sugar and grains for over two months and only felt worse. That opened the door to her being convinced she has mold in her bloodstream.

Right now, she's off all grains but rice (and that's only recently come back), all dairy, all meat but the very freshest she can find (I have no idea how she can possibly get meat or fish that's less than a day old, but that's what she's been instructed to limit herself to), all nightshades, all nuts, legumes and pulses, all soy, all dried fruit, anything containing vinegar, mushrooms, refined sugar (the only one that's okay is coconut sugar. Why that's different, I don't know), honey, agave, and an assortment of other foods that I've lost track of. I think there are a fair number of fruits on the no list, too, but some of those are allergies she started with.

[evalerie.livejournal.com]

That really is scary.

If you're willing to nudge her toward the Gluten-Free Ann Arbor group, we can get people to brainstorm ideas and make suggestions. It's a sensible bunch of people who might be able to nudge her in a more sensible direction.

[evalerie.livejournal.com]

I keep finding myself thinking about this.

I'm wondering why the doctor thinks the problem is reflux, and why your sister-in-law doesn't think it is. That is, sometimes I think doctors are really sure that a problem actually is reflux, while other times the diagnosis seems more like, "Well, we ruled out a bunch of other stuff, so let's try treating for reflux and see if the problem goes away." Plus then, even there is a definite diagnosis of reflux, reflux itself can have any of a long list of causes and solutions. Or maybe your SIL does agree that it's reflux, but she is going to all these lengths just to try to get rid of the reflux without taking medication? Do you know why she doesn't want to take medication?

Anyway, I'm still just trying to understand what her thought process is. I don't think I have the answer.

[the_rck]

Oh, she does think it's reflux. She's just unwilling to take regular medication because she looked at the list of possible side effects and concluded that reflux medications would irreparably harm her. I'm not sure if the specialist was sure it was reflux or just fell back on that as a diagnosis when they couldn't find any sign of anything else.

My mother suggested asking my SIL if she's had her thyroid checked because, if that swells, it can cause a lump feeling, but I think the lump my SIL is experiencing is too low to be her thyroid. It's all the way down near her stomach. I have the vague impression that the thyroid is higher up.

[chorus-of-chaos.livejournal.com]

my mom started complaining of feeling like there was a lump she had to swallow past, it s a sign of Barretts Esophogus, which can become cancerous, it's what my mother died of. I think your relative needs to see a real doctor stat and have them get a look down her esophogus, there is not a big window between "we can fix it" and "things aren't good." Sorry to be just sort of blunt like that about it, but I watched my mom blow it off and try to treat it with pepcid and avoiding certain foods and thinking it was a hiaetal? hernia, and she should have told the doctor about it and that it was making it hard for her to eat and drink. I sincerely hope that whatever is going on it's not barretts, but by god I'd be rushing to rule it out first thing and then looking at all the other stuff.

[the_rck]

My SIL has had an endoscopy. It found nothing, no hernia, no acid burns, no bulges of any sort. She did start with traditional medicine. It's just that, when the solution offered was taking regular medication, she started pursuing alternative medicine approaches.

[evalerie.livejournal.com]

Chorus Of Chaos, you are describing a close personal family member of mine, who has been diagnosed with Barrett's Esophagus and has similar symptoms to what you describe, but refuses to take it to a doctor. Very scary.

[chorus-of-chaos.livejournal.com]

oh boy. I'm so sorry to hear that evalerie. I didn't know about barretts esophogus at the time or I would have hauled my mother to a hospital and refused to take her home until she told them everything :( I only found out about it about a month before she passed, i was in the waiting room of my doctor (one of the doctors I'd taken her too) and that dratted infomercial Health network tv station suddenly started talking about barretts esophogus and I wound up in tears. Why couldn't they have broadcast that a year ago when I'd been in there with her then?