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Recently Diagnosed Fructose Malabsorption


Flowerpj

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Flowerpj Newbie

Hi Everyone,

My husband has just been diagnosed with Fructose Malabsorption and Lactose Intolerance. His history is that he has been unwell since 1997 and until 2003 was trying endlessly to work out what was causing all of his discomfort. I remember at one point, he spoke to a specialist and was told that it was all in his head and proceeded to precribe antidepressants.

Finally after years pressuring the doctors to find out what the problem was his then GP did a blood test and diagnosed him with Coeliacs and instructed him to commence a Gluten Free diet. In the last 5 years we have been on a gluten free diet but there would be times when something would upset his stomach and he would feel unwell for a few days, unbeknown to us - he was having an overload of fructose. We always knew that he had not been confirmed as a coeliac with a biopsy (or so we thought) so there was always that doubt in our mind, but hey the diet was working most of the time.

During his most recent bout of being unwell, he went and had a colonoscopy (which he had had during 1997-2003) and the doctor told him that he thinks he should have a breath test, he also said that the biopsy was negative for coeliacs as it was when he first visited before going on the diet (ohh, we didn't know that!)

Anyway, so after all this time we have now confirmed that he has Fructose Malabsorption as well as Lactose intolerance, and we worked out that the gluten free diet was working so well because Wheat is excluded in the diet. So although we are optimistic that we are on the right track, we feel like - is this what it is and is it going to work?

During the last few years, my husband has had sore muscles and is constantly going to the Osteopath for sore joints and muscles and he has taken any supplements whatsoever.

So, hopefully this week, after seeing a dietician, we find out of his has been lacking in any nutrients from a blood test (which may have been causing the muscle and joint pain?). And hopefully, with all my googling over the weekend, we might have a better grip on the fructose free diet. As we have had experience on a gluten free diet, we have a pretty good handle on it, except that onion and onion powder seems to be in everything that he had been using in gluten free items.

As we are in Australia we don't have some of the items I regularly find in the recipes on the forums (like George Washington stocks), so can anyone help in that area and also with any tips and advise (like stocks and gravies).

Ohh and we are planning on going overseas in a few weeks to USA, Germany and Malaysia - so that just adds to the torment of a new diet. Any suggestions for the plane trip in particular as we know Gluten Free meals exist and diabetic but not Fructose free..................

Thanks in advance.


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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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