fructose intolerance/malabsorption

Thank you for the info on breath tests. Many GI doctors are not enlightened about these tests. My GI doctor, for example, diagnosed me with SIBO based on symptoms and called the breath tests unreliable. My nutritionist subsequently said she wished the doctor had ordered them when I was symptomatic so we could have known for sure. All this is less important to me now because I am doing better, but I would have insisted on a breath test then if I knew then what I know now.

I see the Mayo nutritionist in person.
After my tests, my Mayo GI initially gave me the Mayo Clinic Fructose Malabsorption Eating Plan and recommended seeing the nutritionist, which I did. She then gave me the FODMAP Eating Plan (20 page booklet). I don't know if it is available online or how you get it if not a patient.

There are no firm rules about which foods you start with or the order but the Plan highly recommends you follow their rules/ recommendations if you want to figure out which foods caused your symptoms. You reintroduce 1 FODMAP group at a time and 1 food at time. My nutritionist gave me the order of FODMAP groups to work. The groups (in the order I'm working) are Galactans, Polyols, Fructans, then Fructose (I don't have an issue with Lactose; if so, they would be a group as well).

Within each group there are a a list of foods. You start at the bottom of the list and work up (from lowest FODMAP to highest). What she has me doing is 1 new food every 3 days. Eat the (last) food on the list for day 1, 2 and 3. If on day 1, I don't feel well then wait until I feel better (maybe 3 days) and then try the next food on the list. I then know that I cannot tolerate (or eat) that food. I can always try again in smaller amounts.

If I can tolerate that food, then I wait a day and start with the next food in the same group. As I work myself 'up' the list for the food group, if I find 2-3 in a row that don't work for me, then I probably won't be able to tolerate anything else higher in that food group list.

Once complete a group, go back to basic diet before starting next group and stop eating foods from the first group. Wait about 3 days before starting the new group. Etc.

It is very tedious, but the whole goal is to figure out what you can eat.

There is a website she recommended: http://blog.katescarlata.com/tag/fody-foods/
It contains a Low FODMAP grocery list.

Plus http://www.fooducate.com to get label information of lots of different types of groceries.
And http://www.fodyfoods.com for low fodmap foods you can purchase. They have a really good snack bar (since my old favorite protein bars weren't making my stomach happy!)

Also, for gaining weight there is Nestle ProNourish digestive wellness drink (gluten free, suitable for lactose intolerance, low FODMAP).

Have you though of eating foods that bother you and then having the breath test? Then you'd know whether or not you have fm. Just a thought. It's not too later.

Should also mention the breath test involves drinking a large glass of fructose before they do the breath test. So, you wouldn't have to have gone off your diet.... I'd like to think fm is curable, but have my doubts since it is caused by injury to the lining of the intestine. Mine has not improved; still need to watch what I eat. Good luck.

I am enjoying eating what I can without experiencing diarrhea. Will continue to work with the nutritionist and consider a breath test if she or the physician suggest it. Not sure whether I will ever be able to eat like I used to. But I am so thankful that I can eat food without the food hurting my gut. I was in very bad shape just two months ago.

Should also mention the breath test involves drinking a large glass of fructose before they do the breath test. So, you wouldn't have to have gone off your diet.... I'd like to think fm is curable, but have my doubts since it is caused by injury to the lining of the intestine. Mine has not improved; still need to watch what I eat. Good luck.

Thank you all for this valuable information. The Mayo gastroenterologist did do a hydrogen breath test twice and confirmed SIBO both times. There was no mention of a fructose or lactose intolerance hydrogen breath test. There was no referral to a nutritionist either, only a recommendation to try pelvic therapy, which has been nonproductive after months of therapy.

VERY LOW FRUCTOSE, LOW FODMAPS, AND GLUTEN FREE RECIPES AND DIET - SUPPLEMENTS AND DRUGS
Since the diet is so narrow, I also take calcium carbonate powder (NOW brand) or tablet (365 brand). Note that calcium carbonate is just as absorbable as calcium citrate (which has sugars - citrus- in it) if you take it with food according to one doctor, and my labs are normal for calcium. Also take Vit D3 2200 I.U. capsule (Solar), multivitamin/mineral (365 Age 50+ Multi Iron Free), and vitamin B complex (Naturemade Super B Complex.) I realize what I take may not work for everyone since we are all different, but this gives a start. Other supplements: L-glutamine (bulksupplements.com or Nutrabio.com), lactase (Lactaid Fast Act), probiotic (Flora Advanced adults Probiotic Seven Senior Specific Strains), and Phillips Milk of Magnesia. L-glutamine is supposed to heal the intestine; I use it as a maintenance dose. The same for the probiotic. Regarding the Phillips, I have the constipation version of fm, and use 4 T every 2d or 3rd day. I believe the food poisoning left me with a sluggish digestive system because I also need the prescription drug Creon for the pancreas even though it checks out normal. Tried stopping it and there was a noticeable difference. Also take a compounded drug, ketotifen, which I also tried stopping and realized I still need. Ketotifen is supposed to quiet the mast cells in the gut and it helps. My medical librarian found this for me (among many other things). Also take sucralfate, compounded. Finally, take OTC Prilosec which I'm trying to get off of. Am down to 1/4 tablet/ day. All for now.

NAMES OF SUGARS AND IDENTIFYING SUGARS IN DRUGS AND SUPPLEMENTS.
This is the last installment of the information I wanted to share with you. Boston University has a web site which lists 20 - 30 names for sugar. Google "Boston University Sugars Table" and click on "Table Sugar." This list is intended for those with hereditary fructose intolerance, which is a totally different malady from fm, so ignore whether the table says you can eat the sugar or not. Just use it to identify names of sugars. Incidentally, glycerin is the same as glycerol, a sugar alcohol. Next, you can go to another invaluable federal database called Daily Med. Daily Med lists all of the prescription drugs and gives the package label insert for each. For example, indications and usage, contraindications, precautions, adverse reactions, dosage and administration, ingredients and appearance, etc. Go to "ingredients and appearance" at the bottom of the page and look up the drug ingredients, which includes the so-called "inactive" ingredients. These are often types of sugars, and armed with the Boston University sugars table info, you can decide whether the drug is low sugar or not. Some examples of sugars included in drugs, even those for digestive issues, are sucrose, lactose, corn starch, mannitol, etc. For example, Prilosec has sugar in it (I believe sucrose); why would they put sugar in a pill designed for digestive issues??? Daily Med is a U.S. National Library of Medicine database; the URL is dailymed.nlm.nih.gov. I kept tract of which drugs were ok for me and their inactive ingredients, and made an alphabetical list. For drugs that weren't ok, I made another list of their inactive ingredients that weren't on the ok list. Over time I came to learn the ok inactive ingredients, and could identify ok supplements as well using this information. I imagine the Boston U. Sugars Table would be useful in identifying sugars elsewhere such as in condiments. Hope this helps.

NAMES OF SUGARS AND IDENTIFYING SUGARS IN DRUGS AND SUPPLEMENTS.
This is the last installment of the information I wanted to share with you. Boston University has a web site which lists 20 - 30 names for sugar. Google "Boston University Sugars Table" and click on "Table Sugar." This list is intended for those with hereditary fructose intolerance, which is a totally different malady from fm, so ignore whether the table says you can eat the sugar or not. Just use it to identify names of sugars. Incidentally, glycerin is the same as glycerol, a sugar alcohol. Next, you can go to another invaluable federal database called Daily Med. Daily Med lists all of the prescription drugs and gives the package label insert for each. For example, indications and usage, contraindications, precautions, adverse reactions, dosage and administration, ingredients and appearance, etc. Go to "ingredients and appearance" at the bottom of the page and look up the drug ingredients, which includes the so-called "inactive" ingredients. These are often types of sugars, and armed with the Boston University sugars table info, you can decide whether the drug is low sugar or not. Some examples of sugars included in drugs, even those for digestive issues, are sucrose, lactose, corn starch, mannitol, etc. For example, Prilosec has sugar in it (I believe sucrose); why would they put sugar in a pill designed for digestive issues??? Daily Med is a U.S. National Library of Medicine database; the URL is dailymed.nlm.nih.gov. I kept tract of which drugs were ok for me and their inactive ingredients, and made an alphabetical list. For drugs that weren't ok, I made another list of their inactive ingredients that weren't on the ok list. Over time I came to learn the ok inactive ingredients, and could identify ok supplements as well using this information. I imagine the Boston U. Sugars Table would be useful in identifying sugars elsewhere such as in condiments. Hope this helps.