Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

shimo

Fructose Malabsorption - Help Needed

Rate this topic

Recommended Posts

Hi everyone,

By any chance is someone on this board familiar with FM?

I have a big dilema here. Let me keep the story short. Me and my mom have the same exact symptoms and almost the same reactions to food for years and years (the difference is she tolerates pain less then I do, but well... she's older and much more tired of it).

She always "knew" it was on what she used to eat so she never really paid attention to it and well, she has her own diet with problems here and there. I obviously got tired of having symptoms so I went to see my doctor and voila. AntiBody tests suggested Celiac Disease, so I was instructed to eliminate gluten and see how things went until I could get a biopsy done (which will be in less then a month - I can't wait).

Now, even though I got almost an immediate symptom relief (not all of them but most of them, and they became less frequent), I never got at 100%. Meaning, I would still be bloated now and then, still be depressed for no reasons at all, and all the other celiac symptoms. They were just not THAT frequent anymore.

I finally had convinced my mom to get her tests done so her doctor decided to order some tests (very expensive ones compared to mine btw). Her samples were sent for analysis to a Center in Germany (she's in Belgium). 3 Weeks later, the tests come back - Fructose Intolerance and "Slight" gluten intolerance but apparently, it cannot be Celiac Disease because Fructose was way higher in the chart. I am not sure what kind of test it was because I do not live with her anymore...

I'll get my doc to test me for that as well, however let me tell you that staying away from Fructose/Sorbitol seems to have an effect on me. I was actually already staying away from it without noticing. Examples are... most of the juices out there would make me sick, and I started to think they all used Gluten as preservatives or whatever (while some of them do not do that). So water is all I drink for at least 2 months... I guarantee that if I take a glass of fruit juice I get sick, it's almost immediate especially if it's Tropical flavours. I tolerate orange juices more or less; but I still avoid them so I don't have any surprises.

I am going to get a test for this asap, but just wanted to share this with other people that might have the same problem. This sucks! I just wonder what I will be able to eat after all this... even if celiac disease is not confirmed on the biopsy and FM is confirmed, I will still have to avoid Wheat anyway... nothing will change.

It still sucks if it's Fructose. The "forbidden" ingredients list is way bigger then celiac disease.

This is crazy.

I read that some people with Celiac Disease also have Fructose Malabsorption or Lactose Intolerance, or sometimes everything together. Is this the case of someone here?

This is what I currently have to stay away of in order to feel "normal". So far, with a trial and error diet, this is what I found:

- Onions

- Most fruits (Found out that strawberry, banana, and citrus seem to be harmless for me)

- Tomato (and everything connected to it)

- Sorbitol (This one is really bad for me, found that out with a product from Sch

Share this post


Link to post
Share on other sites

I can't really help you on fructose intolerance. I have enough problems dealing with gluten, casein, egg, soy & yeast intolerances, plus being a vegetarian. And I think I have a problem with flax and/or sorghum too ...

However, I will say that having a "higher" score for one intolerance than another doesn't mean that you only have to worry about the highest one. At least with the folks who tested me (Enterolab), they say, positive is positive. The score is irrelevant. I have the strongest reaction to one of my lowest scoring items.

Also, a red flag jumps out in your post. You were told to go OFF gluten and you are going to be biopsied in a month? The test results won't be valid. You have to be on gluten for a substantial period of time for the test to mean anything.

I think you have your answer as far as gluten is concerned. You had the antibodies and a positive reaction to the diet. Complete healing can take some time. (It is also true you could have another intolerance.) There is nothing the biopsy could tell you worth getting sick for, assuming you rescheduled so you can start loading up on gluten for a few months so the biopsy would be meaningful.

Since your doctor doesn't know about not going gluten-free until after biopsy, I wouldn't trust him to know how to do and read the biopsies either <_<

Share this post


Link to post
Share on other sites
I can't really help you on fructose intolerance. I have enough problems dealing with gluten, casein, egg, soy & yeast intolerances, plus being a vegetarian. And I think I have a problem with flax and/or sorghum too ...

However, I will say that having a "higher" score for one intolerance than another doesn't mean that you only have to worry about the highest one. At least with the folks who tested me (Enterolab), they say, positive is positive. The score is irrelevant. I have the strongest reaction to one of my lowest scoring items.

Also, a red flag jumps out in your post. You were told to go OFF gluten and you are going to be biopsied in a month? The test results won't be valid. You have to be on gluten for a substantial period of time for the test to mean anything.

I think you have your answer as far as gluten is concerned. You had the antibodies and a positive reaction to the diet. Complete healing can take some time. (It is also true you could have another intolerance.) There is nothing the biopsy could tell you worth getting sick for, assuming you rescheduled so you can start loading up on gluten for a few months so the biopsy would be meaningful.

Since your doctor doesn't know about not going gluten-free until after biopsy, I wouldn't trust him to know how to do and read the biopsies either <_<

Hey, thanks for replying.

Well as far as the biopsy thing, I am not gluten free for a lot of time. I didn't know you had to stay gluten-free until the biopsy, aren't the villi supposed to take months to heal? I guess that's valid for IGA tests, not sure if it is for the biopsy.

Anyhow I'll trust him for now, he won't read it or do it himself, this is going to be performed by a GI at the clinic I suppose. He isn't even going to be there.

I will however mention this to him and check what he has to say about it.

Share this post


Link to post
Share on other sites

Please do some more research on this, rather than just relying on your doctor. He already told you to stop eating gluten prior to the test, so he doesn't know. We've had plenty of threads about doctors being wrong, about this and other things.

I ran a search and here are the results:

http://www.google.com/search?q=biopsy+eati...p;submit=Search

I don't know if that is the best search I could have ran, but you can see that this isn't just some notion of mine. I think everyone who has discussed this on this forum agrees with me.

It can take months to heal, or the healing can be quicker. I've seen plenty of folks mention false negatives with the biopsy because their doctors were wrong about the gluten ingestion. If the damage you may have to your villi is minimal (so far), it could heal before your endoscopy.

You might start a new thread on this topic for more information for those who have gone through this themselves -- either getting false negatives because they didn't eat gluten or not enough for long enough, or suffering because their doctors (correctly) tell them that they need to be consuming gluten for the test to be valid. Folks aren't seeing this subject and commenting now because the thread title is about fructose.

You also have to ask yourself what you would do if the biopsy is negative and you have been off gluten for an appreciable time, with positive results. Will you start eating it again? People are suffering damage from eating gluten before there is noticeable damage to the villi. Does it make sense to wait until the damage is done first?

Share this post


Link to post
Share on other sites

Hi again,

Yep, not arguing or contesting that. I do believe what you're saying.

I'll ask him about this on the next appt. This does not surprise me though. :)

Thanks for the inf and have a good xmas!

Share this post


Link to post
Share on other sites

A quick google found this wikipedia article on fructose malabsorbtion: http://en.wikipedia.org/wiki/Fructose_malabsorption

Somewhere in there there's a mention of the connection between FM and wheat (since you asked!)

There's another connection with celiac though since FM can be a consequence of a damaged intestine. I wonder if staying gluten free for a long time people sometimes see their FM resolving?

I agree you shouldn't be gluten free before biopsy.

Pauliina

Share this post


Link to post
Share on other sites

Hi Shimo,.

I'm new here and had to reply. My husband was diagnosed about 2 weeks ago with Fructose Malabsorption and also Lactose intolerance via a breath test. Here's the funny part - For the past 10 years he has been unwell and feeling lousy and after a blood test about 7 years ago, his GP told him he had coeliac thus he went on a Gluten Free diet. Most of the time he felt fine but there were occasions when he just wasn't right and we always wondered what gluten snuck in to his food.

As we live a few hours from most of the specialists he never saw a dietician. Prior to his breath test he had a colonoscopy and the doctor told him to have this breath test, he also said he had tested for coeliacs via a biopsy and it was negative (and it would be after being on a gluten free diet for almost 7 years) he also said that he tested with a biopsy when they were trying to figure out what was wrong with him 7 years earlier and it was negative then (news to us because we didn't know the had tested him for that).

We always knew that it had not been confirmed with a biopsy but hey he felt better most of the time.

Now, we are just trying to get our heads around another diet, and we thought gluten free was bad! This onion and onion salt is in almost everything.

I've spent the last few days searching the net for forums like this which has recipes and ideas for FM diet.

I am in Australia and alot of the recipes are from USA which include items I don't think we can get here other than stand for hours in the shopping isles looking for substitutes.

Any ideas and suggestions you can pass on would be great,

Thanks in advance,

Flower

Share this post


Link to post
Share on other sites

As a Metabolic 'Protein' type I have never been able to cope with much in the way of fruit and could never figure out why.

I always needed plenty of protein otherwise I get headaches and I have never been able to cope with carbs either. I couldn't figure out why on that either.

A few weeks ago I discovered the Metabolic Typing Diet and after doing the questionnaire it confirmed that I am a fast-oxidiser Protein metabolic type.

The only fruit it listed for my type is pretty much the only fruit I can cope with - no more than 3 bananas a week, some apple and some pear - cooked is better. Other than what is on the list I can cope with a few blueberries but that is all. It is weird - as I looked at the food list for my type it all made sense.

My background is Anglo-saxon originating from northern Scandinavia where the diet would have consisted mainly of meat and fat and little in the way of carbs. Some originate from climes where carbs would be the predominant staple and many sit at some point on the scale between the two. It's the extreme protein types who seem to have the most problems as our 'Western' diet is structured around so much in the way of carbs.

I have been following it now for 3 weeks and gradually my body is starting to sort itself out.

Share this post


Link to post
Share on other sites

I thought I had a problem with fructose but then someone who knows more than me about nutrition surmised that it might in fact be sorbitol I have a problem with. And in fact I can not eat any foods sweetened with sorbitol because it makes me quite ill.

I have never been a big fruit eater. But I used to like cantaloupe and would sometimes have 1/2 of one for lunch filled with cottage cheese and accompanied perhaps by some fresh berries. My dad had raspberry bushes. I could eat those, blackberries huckleberries and strawberries with no problems. Apples and pears were not a problem. I could eat grapefruits, but oranges would give me mouth blisters as would fresh (but not canned) pineapple. This was in the days before I knew of my food allergies.

Then one day we were at an all you can eat buffet in Las Vegas. Even then I was a picky eater and at the time a vegetarian. I did not like eating sweets like pastries for breakfast and that was mostly what they had. I took a little bit of something and was still hungry. So I went back for some canteloupe slices. I started eating them and suddenly was doubled over with stomach pain. It was so bad I could not move from my seat and after sitting there in misery for close to 2 hours, I was told I needed to leave so someone else could use the table.

That was the start of it. Now, many fruits leave me with stomach pain. I can eat non sweet fruits like cucumber and tomato. I can eat cooked apples and pears. Can even eat a very small amount of raw apple with no problem. But not a whole apple. And no problem with pears. Or strawberries. One single raspberry gave me stomach pains, but I also have gastroparesis so that could be the cause of that. But melons? Forget about it! I am doubled over with stomach pain.

I can't really say much about other fruits because I don't eat them. I am diabetic and shouldn't really be eating much fruit. I will occasionally have grapefruit and that doesn't cause a problem. Or a few cherries from our tree. But mostly I just stay away from fruit because I can't stand the pain!

Share this post


Link to post
Share on other sites

I don't know if candida has anything to do with it, but I'd think that would be something to look into. This board has tons of posts on the subject, which you might find helpful.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What did you find out about your daughter ? My son is 6 and has used the exact same sentence!! He feels like there is a bubble in his throat. He has been complaining on and off for the last year and recently it seems he complains more Ans Wants me to make a doctor appt. he had reflux bad as a baby until about 2.5 and allergies to fomula Ans my milk but since then I thought that all went away. 
  • Blog Entries

  • ×
    ×
    • Create New...