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I've Been Told Diff Things By Diff Doctors!
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6 posts in this topic

What do I do?

What are the NORMAL symptoms of gluten intolerance?

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Lol! That's a question without an answer. Or rather, it has a really long answer with a lot of different things. Not to mention that a LOT of celiacs do not have normal symptoms. (I didn't.) While weight loss and diarreah and abdominal pain are listed as common symptoms, some people have no physical symptoms and just mental ones (brain fog, irritability, etc), and some people have the opposite symptoms (weight gain, constipation, etc).

Have you been tested? If so, what tests? Have you tried going gluten-free? Did that make any difference? Do you have family members with celiac or IBS or other digestive issues?

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There are many symptoms of Celiac Disease, in fact over 200 of them. Here is a link to a list of symptoms located on this website click Here for the list. There are also other symptoms that are not listed, each person is different. Some people have this diease and severe symptoms and some don't have any GI problems at all, maybe just anemia.

If you don't mind maybe you should give us a little more info about yourself for example, have you been tested, what kind of symptoms are you experiencing, if any?

I hope this link helps....

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I wonder if all the different symptoms related to WHICH part of the small intestine is damaged. Perhaps different sections absorb different nutrients and that is a factor. My primary debilitating symptom was ever-increasing fatigue. A blood test showed B12 deficiency (but not iron deficiency) and I understand B12 is absorbed in the lower intestine (ileum). I also had mild-moderate steatorrhea but otherwise OK bowels. Oh, I think I had DH but that was "cured" symptomatically with cortizone cream and I regarded it as so trivial that I never mentioned it to my doctor.

The never-ending saga......

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YankeeDB,

Vitamin B-12 can only be absorbed at all if sufficient levels of "intrinsic factor" are present in the stomach to convert it into a form that is usable by the body. If B-12 supplementation is necessary, methylcobalamin is preferred because it is already the "active" form of the vitamin. Cyanocobalamin, while more common and less expensive, has to be converted by the body and is useless if the conversion mechanism is defective. I just thought you might find this interesting. I hope you're doing well!

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Sarah,

Thanks so much for your informed response. My intrinsic factor was OK, according to my doctor. Since the b12 problem was discovered, first I received monthly shots (1000mcg) and now I'm taking the sublingual form (1000mcg daily) of the supplement to bypass my battle-weary digestive track. My B12 levels are good now and I've used both methyl- and cyano- forms at different times so at least something is going right.

I'm still wondering if pancreatic insufficiency (another potential factor underlying b12 problems) may be at issue.

Quite a tangled (but interesting) web.

I'm just on the first steps of gluten freedom and have lots to learn and figure out.

Ann

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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
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