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Concerned Son

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Oh, I'm so sorry to hear that he is having a hard time!

First, as an aside, have you been tested for the disease, too? there's a 1 in 22 chance that you have it, if your father does (my father was diagnosed, and 3 of the 4 family members we tested afterward came back positive, even though none of us had symptoms).

On to your father - when I was diagnosed, I got very sick in what sounds like a similar manner, only mine happened very soon after I went off gluten. I lost weight, was nauseated no matter what I ate, and my diet went down to nearly nothing because EVERYTHING made me so very sick.

So, I can pass on what I've found in the hopes that perhaps this may help you and your pater. Just a couple ideas...

- You may want to check out a condition known as 'fructose malabsorption.' This is NOT just about fruit. It is a condition that is caused, not inherited, and while they don't know a lot about it, they have been finding it more often in people who already had some gut issues, such as people with Celiac Disease. People who have this can react to fruit, vegetables, grains, even dairy. It can cause gut issues, but can also cause depression and sleep issues as well, or instead of. There is a breath test that can test for it, however, according to a doctor I trust, that test is best done AFTER your father has gone off the bad foods and is feeling better. Otherwise, the test doesn't seem to be as reliable.

This link describes what it is, and discusses a potential diet: fructose malabsorption

- He might have new allergies, sensitivities, or intolerances. These can happen suddenly, rapidly, severely, and according to my doc (who specializes in celiac disease), celiacs are more likely to develop other food issues throughout their lives.

It might help if your father cut everything pre-made out of his diet, cut nearly everything else out as well, and started a food journal about how he feels, what he eats, etc... This is what I had to do because I was so sick I didn't know what else to do, and I finally started to notice a pattern between how bad I felt and what I ate. The only way I could do it was that I literally went without food for a day or two, drank only water, took nothing else into my mouth, and started feeling better. This is, in my opinion, a good start. If your father doesn't eat and feels better, then it's a good bet that food has been causing the problems and he can figure out what to do from there, yes?

And to add to that - anything that touches his mouth can count. Lipstick from his wife, shampoo that gets in his mouth during rinsing, lip balm, anything.

When I put food back in, what I did was add in one food at a time, and I didn't eat it again if it made me sick. I'm very glad I did, as I reacted to so much I don't know how else I would have discovered what was wrong. I reacted to everything from the grain family (quinoa and amaranth were the only things I can have as 'grains'), all meats but buffalo meat, all fruit but avocados, all nightshades, all dairy, all legumes and nuts, all vitamin supplements...it was really, really crazy.

Some turned out to be allergies, and some made me sick but no doctor has an explanation as to why, although intolerances are suspected(the only intolerance tests to date are for lactose or fructose intolerance. They know others exist, but we can't test for them, yet, so trial and error is the only way to find them). My GI doc's suggestion was simply to avoid the food if it made me feel bad: they didn't need to know why for me to do what I had to do to feel better.

My Gastroenterologist specializes in celiac disease, and here's what he told me: people with celiac disease are more prone to develop allergies or intolerances, and have reactions, to foods, preservatives, etc... This seems to be the case with me.

At first I could only eat 6 foods without getting terribly sick to my stomach, etc... It's been 8 months since that happened, and after staying away from these foods, I have slowly started to improve. I have been able to add other foods back into my diet, a little at a time, but it has been a slow, slow process.

If your father is looking to cut out only certain foods, and fructose malabsorption doesn't look reasonable to him, I would suggest looking at corn, at the very least. I would almost guarantee that he has had corn with every meal, every day. They add corn to iodized salt, to baking powder - nearly anything with a powder gets cornstarch added as an anit-caking agent. It is what xanthan gum is derived from as well as many types of citric acid and dextrose. It is put in between paper plates to keep them from sticking, added to the ice that vegetables are stored in at the grocery story...it's in everything. If he were to develop a sensitivity to it, it could have happened suddenly, and he'd have to really know about it to be able to avoid it. There's a good site on what to look for to avoid corn, here: Corn allergy site

I don't know if these will help, but I wish you and your father the best. It's been a difficult road for me, but it does get better. I found a good dietician to work with my doctor, and she helps me trying to work towards a healthy diet (I can't get all the vitamins and such I need with my current diet, yet). It's possible to come back from this, if food is your father's problem too. I hope that he finds the answer soon!

My father (57) was diagnosed as a coeliac three years ago. Since then, he


Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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In addition to what was already mentioned, does he take any meds, OTC or script? Is he checking those for gluten statis? Also since you refer to his weight in 'stones' are you in Europe? There are gluten free items there that contain codex wheat starch, does he eat any of those? Although considered safe there are celiacs who will react to it. If he consumes items with Codex wheat starch he should drop them.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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All good advice already. Getting off all processed foods is a good way to start troubleshooting. Soy and nightshades, (potatoes, tomatoes, peppers) are common problems for us. Dairy is also often a problem and maybe he should get off that again. Sometimes reactions don't show up in one or two days but can build up after a while. Eliminating all vitamins and meds (that aren't critical) for a few days and adding them in one a time over several days each can help find problems also.

Additional intolerances seem to show up when they feel like it and we have to keep aware and go back to basic eating every once in a while to identify them.

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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