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Page history last edited by hedra 14 years, 7 months ago

Welcome to hedra's Fructose Malabsorption resources page

 

This is a wiki - a collaborative resource - for people interested in managing fructose malabsorption.

 

This site is set up and maintained by patients and caregivers, and is not a medical reference. Please consult your medical care provider for diagnosis and treatment.

 

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I  have enabled commenting for readers, so if you have a question that hasn't been addressed, or want to see more information on a subject, add it as a comment.

 

 


Comments (16)

anneke said

at 1:43 am on Mar 28, 2010

Any correlation between FM and gout/other forms of arthritis?

hedra said

at 7:37 am on Mar 28, 2010

Joint pain is commonly reported, along with some swelling for some individuals, especially if there are food sensitivities or hystamine sensitivity involved (very common underlying issues or co-issues). I haven't heard of gout specifically, but inflammatory reactions (and loss of some of the biochemical efficiency through lower absorption of tryptophan) might worsen symptoms. For example, my oldest child with FM (out of three) suffered joint pain, particularly in the evenings, with swelling around his wrists and ankles. He used to ask us to squeeze his ankles so he could sleep. The pressure seemed to help.

I'm personally sensitive to dairy proteins (the allergist said 'not IgE allergy, but definitely a physiological reaction - just one we don't yet have a test for'), and consuming cow dairy causes me joint pain similar to arthritis, with swelling. I've heard similar for some people with IgE allergies (wheat, for example). Food allergy can be an underlying contributor to FM (secondary FM).

anneke said

at 2:40 am on Mar 29, 2010

Thank you so much, Hedra!

Can the amount of tryptophan in the blood be measured? - and can one take a tryptophan supplement?

Anneke

hedra said

at 4:28 am on Mar 29, 2010

I think the amount can be measured, though I don't know how reliable the measures are. Some people take 5HTP as a support for the tryptophan process (i don't know what it does or how it works), but it is HIGHLY recommended that you speak to a healthcare professional on that. Many of these supplements have limitations, risks, and contraindications (reasons you shouldn't take them based on your health profile).

The problem with just boosting tryptophan is that if you are fermenting still, it will still be blocked, and if you have inflammation from another cause (like food allergy), it won't really get past that. Getting to a good baseline diet is the best start point.

Christina Bradford said

at 8:21 pm on Apr 4, 2010

Hi,
My daughter has FMal- Is there anything I can do to help her fall asleep better. She gets plenty of exercise, and keeps regular hours. I am relatively knew to this whole FM thing. Wish it was as easy as not eating one thing, and you'd feel better. So far, we cannot even introduce fruit without pain!?
Thanls

hedra said

at 7:06 am on Apr 5, 2010

You can talk to your doctor about melatonin supplements. They may help. Also, sunlight in the early morning seems to help support maximum melatonin production for bedtime. We also have tried calming meditations, having everyone go to bed at the same time (including adults - we just get up early instead), massage, and making sure no tv exposure for 3 hours before bedtime (the light shifts the body's response to waking instead of sleeping). Oh, and a sundown clock (pricey, but did help), and white noise. Pretty much, if the melatonin function is going to be low due to the tryptophan level being lower, then you have to nibble at EVERY other angle to get it to work. As we've got the diet more balanced out, bedtime has eased up (age also helps - certain ages just have a harder time settling, especially on the 'half-year' phases of brain growth (around 4-9 months after the birthday, for 3-6 months, less capacity to self-regulate).

I guess the trick is it wasn't just ONE thing, but everything at once. A lot of skills had to be developed to compensate for lacking a strong natural process. It takes time to develop the skills to fall asleep when you don't feel tired or settled because your body is out of kilter...

ladyseashore said

at 9:40 pm on Apr 7, 2010

Hello,
Since IgE blood test showed high for wheat, I have been wheat-free for more than 12 years and diagnosed with IBS for the last 10. During the past year my IBS symptoms have started to resemble more FM than IBS.

I recently started the elimination diet and see some improvement with bloating, dyspepsia and cravings for fruit. Part of this early relief maybe because I was eating 90 percent of the fruits and vegetables contraindicated for people with FM!

This is what I would like to know:What I would like to know is: Are there any withdrawal type reactions
with the FM elimination diet? Is there average window of recovery? By this I mean for the intestines to heal.

Also, I can clearly see I have a reaction to onions, green beans, apples,cherries, etc., but I don't think I react badly to garlic. Is that possible? I would like to continue the Kyolic garlic supplement I
usually take. It contains other herbs and vitamins in addition to the garlic, which is in powder form. Is there a threshold limit for garlic? And is there any restriction on psyllium or apple pectin, which I have taken to stay regular?

Thanks for taking the time to respond to my post.

hedra said

at 2:50 pm on Apr 8, 2010

There are a couple issues I want to separate out here in reply, so bear with me...

1) You can simply over-eat on fructose and cause yourself the same symptoms, so just because you have FM symptoms when you eat mainly high-fructose foods doesn't mean you are necessarily suffering from FM - or you may be marginal (I am marginal, three of my kids are definite).

2) Sugar cravings are pretty common when changing the diet, but mostly the other symptoms are improvements of other things - generally feeling better. If you have significant other symptoms of withdrawal (including aches, nausea, feeling shaky, flu-like, etc.) you may have SIBO/SBBO (small bowel bacterial overgrowth) or a yeast overgrowth either alongside FM or instead of FM.

cont...

hedra said

at 2:51 pm on Apr 8, 2010

3) FM doesn't cause damage on its own, really - it is often a reaction to damage from other things, though. So if you have primary FM (that is, the FM is not caused by damage to your intestines from something like celiac disease, food allergy, or infection but is just a lower genetic tendency or natural decline in function with age), there is no such thing as 'healing' - this is a normal state condition. Just like lactose intolerance is a normal state condition - you can support improved symptoms with enzymes or probiotics for LI, but you can't 'heal' it. HOWEVER. If you have secondary FM (lower absorption due to gut damage or inflammation or infection), then removing the cause can then promote healing which then will increase function. The profile for recovery will depend on the cause. If you have celiac disease, removal of gluten from the diet promotes healing, but it can take six months to get to full recovery. If you have an infection, it would depend on what kind of damage was done and for how long. Same for food allergies or other causes of inflammation - it depends on how bad it was, and how fast you recover in general. two to eight weeks is not a bad window to use, but much of GI inflammation/injury is not well-understood yet - so it is hard to say.

cont...

hedra said

at 2:51 pm on Apr 8, 2010

4) It is possible that you react somewhat more to polyols (apples, cherries, green beans) and 'free fructose' (without enough glucose) (onions, applese, cherries) than you do to fructans (onions, garlic, wheat) - so the profile matters. Many people with FM discover that they react more to one of the aspects of the profile than another (mainly polyols or mainly fructans or mainly excess fructose). Some people don't seem to react much to fructans on their own, others react a lot to fructans on their own. The only way to be sure is to trial it and see.

hedra said

at 2:51 pm on Apr 8, 2010

(more still!)


5) There are thresholds for almost everything, but it is in combination. So there isn't one threshold for garlic and another for grapes and another for strawberries. It is additive. So you can only consume so much of ALL sources in a day, or at a time, or without other foods to slow down GI transit, etc. You could eat a clove of garlic straight and seem fine one day, but another time that would be too much - because in the past day or few days you had X amount of fructose/fructans/polyols. It is the component parts that have a threshold limit. Say, my kids can have one clementine orange, or a banana, or five grapes, or one frozen/thawed strawberry. But if they have half a banana plus half a clementine plus half a strawberry plus two grapes, they are WAY over on their daily limit. And things that might not bother them much on a good day may then push things over the line - so, in the morning, one has some blueberries, sneaks half her sister's clementine at lunch, has a few carrots from her grandma's salad before dinner, then eats a frozen strawberry for dessert (or breakfast the next day), and ends up with cramping and diarrhea. It wasn't the limit on any one thing, it was everything in series over time. Phew! It would be easier if it was just 'only X amount of garlic per day'... way easier.

(cont...)

hedra said

at 2:52 pm on Apr 8, 2010


6) psyllium and/or apple pectin. I believe pectin is safe, though people have had trouble with psyllium, I think. We found that NO regularity support was required for the one child of ours who has constipation as a symptom, once we pulled the fructose load down to a range she could handle. It seems crazy that reducing fiber-rich/fructose-rich foods would make her more regular, but that's how it worked. We could also push the fiber and fructose/polyols (prune juice) waaaaay up, and that would help for a bit, but the second we eased off, she'd get stuck again. Strange that going to way way way too much would 'work' even a little - but for her type of function it seemed to help (but was actually making matters worse). Once we figured out that she also had FM, taking diet to where it should be for her (only a small amount of fructose balanced with glucose, almost no polyols, few fructans) made life much better - her gut acts normal when her diet is normal-for-her. It just isn't five-fruits-a-day, and which fruits matters.

The yahoo group fructose_malabsorption_australia has some discussion of what fiber supplements are best to trial. (I own that group as well.)

hedra said

at 2:53 pm on Apr 8, 2010

Good luck. There's a reason this hasn't been diagnosed much in the past - it is COMPLICATED. Symptoms vary, are sometimes vague, are not tied directly to eating of 'the' problem food, occur at a delay from the intake, occur cumulatively, can be primary or may be symptoms of another underlying condition, etc. But once we got our brains around it, it got much easier!

ladyseashore said

at 10:21 am on Apr 9, 2010

Hi Hedra,

Thanks so much for your kind and detailed reply. You're absolutely right about how variable the symptoms can be. Your explanation helped me understand why I can feel fine one day and not the next.

Over the years, I have kept track of my reactions to certain foods, but I did not know about the category of carbs called FODMAPS. It's like looking down from an airplane to ground below. I have a much better perspective now on what triggers symptoms.

I've also joined your main FM list. Again, I appreciate you helping me navigate this important part of understanding IBS.

Julie Robbins said

at 7:03 am on Aug 15, 2010

Hi Hedra, I read on your FM site that spelt flour should be avoided. I have found that it is ok for me, so I guess it is a matter of test and see for others. My partner did a lot of research into spelt and read that it does not have fructose/fructans which developed in later wheat. Very interesting. Keep up the good information. I understood more about FM from reading your pages than I have in 3 years reading everything else on the internet. Cheers

hedra said

at 7:03 pm on Sep 14, 2010

There's new info coming out all the time - always worth checking the latest info!

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