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Trying The Challenge


aknapp1978

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aknapp1978 Newbie

Hello everybody,

I posted a couple of weeks ago that I had a celiac test (ALL of the symptoms except the weight loss) and it came back negative. I have since gone to an allergist. They tested me for all of the major food allergies (milk, wheat, soy, dairy, corn, yeasts, sugars) and the only thing that came back positive was a possible slight allergy to milk.

So, I am going to follow everybody's advice and try gluten free. The allergist's nurse told me (for the milk) to avoid all cassein for one week and then overload on it on day eight to see if there are any repercussions. Knowing how my body reacts to anything, I am dreading day eight. I am also starting South Beach to help regulate some hormone problems, so I figured this is a good time to do it all since they all basically limit carbs for two weeks. As long as I am doing the cassein, I'm going to add gluten in too.

What can I expect during this Gluten-free Casein-free week? Should I start to feel better after a few days or will it take longer than that? I'm scared that it may come back negative (i.e. on day eight I'm fine.) People think I am crazy that I would be so excited about finding out that I can't tolerate gluten and/or cassein, but at this point I think I would give up just about anything to get rid of this!

:D Mandy


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Rusla Enthusiast

Your not crazy, it is because you are excited to find out what makes you feel better and not worse. Good luck with your week. Remember the blood test can come up negative even if you are positive. Some people see changes immediately in the week and some don't . I definitely saw changes in a few days, then I saw a reversal and found out I had accidently been glutened. Casein is a big problem also, why they add it I will never know.

RiceGuy Collaborator

I would not be surprized if your hormone problems are due to the gluten too. If it were me, I'd do gluten-free first by itself, and go from there. You should avoid casein too of course, not only because it was recommended, but because many who are gluten intolerant find they can't take casein. It may be that once your system recovers enough, that casein would be tolerated. It just depends on your system. As for the carbs, I need those, so I wouldn't want to avoid that unless there was a good reason.

I began to notice improvement only after about six months. However, I have extensive damage from what I can tell, so that would explain it. Recovery is very very slow, but obvious enough to know it's working.

I don't know about the overload idea though. It doesn't take much of the wrong stuff to make many members here quite ill. If I have even a small taste of wheat I'm in for a rough week at least.

darkangel Rookie

Eliminating gluten and casein made a huge difference for me very quickly. I went from multiple bouts of gut wrenching cramps and diarrhea per day to almost perfect bowel movements a couple of times a day. I'd say the transition only took a few days.

CMCM Rising Star

I haven't done any tests yet, but I also had all the symptoms except for weight loss. I started a gluten free/dairy free (mostly) diet the day after Thanksgiving. I also eat virtually no sugar. I definitely noticed a big difference within a few days, although I still don't feel perfect. You mentioned the South Beach Diet.....I'm more or less doing Atkins, which is similar, but I do have a 1/2 grapefruit or an apple here and there....I just can't go without any fruit. But other than that, I eat mostly veggies, salads, some meat and fish, I only drink water or an occasional black tea w/Splenda. So while I don't feel what I would consider "perfect", I do feel enormously better. About 3 years ago I did a very strict Atkins induction program for 5 or 6 weeks, and it shocked me at the time how great I felt. I never connected that to the fact that I ate neither gluten nor dairy of any kind. Now when I look back, I can see the connections.

As for testing, I just think it's not entirely accurate yet. Tests don't show everything. They made a big to do about the prostate cancer blood tests a few years back, but now they are back-pedaling somewhat and saying "well, maybe it doesn't show everything." Ultimately, the real test is how you feel when you eat certain foods. If you've always had problems, elimination type diets are great because you can find out exactly what bothers you. I have always, as long as I remember, had a "sensitive" stomach. I know when I eat certain things including wheat based products, and also dairy, that I will pay for eating it. Sometimes it's worse than others, and sometimes, oddly, I don't react as much as I think I will.

For me, I can see a careful diet works wonders (aside from improved digestion, my chronic asthma type symptoms/chronic cough just suddenly evaporated), but I really want to know if I actually have celiac because my mother does and therefore I have a better than average chance of having it, and if I do have it I have to consider the intestinal damage that could occur from eating gluten now and then. If I don't have celiac, then choosing these foods or not is a slightly different matter.

I guess I would advise you to eliminate gluten and stick with it for a month at least and see what happens. If a lot of your symptoms go away, that should tell you more than an often imprecise blood test. If you think about it, doctors are mostly pretty clueless about celiac, so why should the blood test be considered a "gold standard" of diagnosis? In a related vein, for 20 years I've had fairly textbook symptoms indicating mild asthma. I've been tested for asthma, they always say I don't have it, yet I have what certainly resembles asthma and I have to deal with it. My conclusion is now that perhaps my asthma type symptoms were caused by ingestion of gluten and/or dairy, or both, because removing them from my diet changed things. I don't need a doctor or test to confirm that result!

Hello everybody,

I posted a couple of weeks ago that I had a celiac test (ALL of the symptoms except the weight loss) and it came back negative. I have since gone to an allergist. They tested me for all of the major food allergies (milk, wheat, soy, dairy, corn, yeasts, sugars) and the only thing that came back positive was a possible slight allergy to milk.

So, I am going to follow everybody's advice and try gluten free. The allergist's nurse told me (for the milk) to avoid all cassein for one week and then overload on it on day eight to see if there are any repercussions. Knowing how my body reacts to anything, I am dreading day eight. I am also starting South Beach to help regulate some hormone problems, so I figured this is a good time to do it all since they all basically limit carbs for two weeks. As long as I am doing the cassein, I'm going to add gluten in too.

What can I expect during this Gluten-free Casein-free week? Should I start to feel better after a few days or will it take longer than that? I'm scared that it may come back negative (i.e. on day eight I'm fine.) People think I am crazy that I would be so excited about finding out that I can't tolerate gluten and/or cassein, but at this point I think I would give up just about anything to get rid of this!

:D Mandy

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
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    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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