Gluten Intolerant - but not Coeliac x2

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herika, Jul 26, 8:45pm
Starting this thread up again. Are you gluten intolerant, sensitiveor allergic, but not actually a Coeliac. Can you not tolerate gluten or other things - such as vege gums, cows milk, corn, tomatoes, high fibre foods, soy or anything else. Vegetable gums (which I react really badly to) are in so many pre packaged foods that have Gluten Free on the packet and it means I cant have them. Who else is in the same boat? Im casein intolerant and find Im okay with Nanny Lane Goat milk but not cows milk. I have to be very careful not to eat even the smallest amount of gluten or else Im in trouble. Hopefully this will be a support thread for sharing our thoughts, feelings and any help we think could be of use to others similar to ourselves. :)
herika, Jul 26, 8:48pm
I think it would be great to share our stories and experiences and what we can and can't eat. For instance some people can't have rice - I dont know what I'd do if I couldn't have rice! Hopefully this thread will be informative and helpful for anyone NZ wide :)
herika, Jul 27, 2:17am
A bit of info: to test for gluten sensitivity, also referred to as intolerance, the tests needed are the IgG-gliadin and the IgA-gliadin ones. MedLab South in Christchurch does these tests, if anyone knows of anywhere else where these are done, please let us know. You must specify you want this test esp. if the CD ones come back negative. Out of 500 people tested the figures say that only 50 have Coeliac Disease. :)
gaspodetwd, Jul 27, 5:56am
Great this is up again. My two are GF not coeliac and cannot have any gluten - or tomatoes, capsicums, potatoes, avocadoes, eggplants, soybean oil, oranges or grapefruit. Some nuts are questionable. And as long as they follow the rulesthey are both very healthy!
herika, Jul 28, 5:25am
Thats it! Find out what you cant eat and dont eat it. Thats what I do and I dont have any problems - unless of course a manufacturer changes or adds an ingredient I cant have to a product that didnt have it before! Thats part of the reason why I eat very little pre prepared or packaged foods and make most of our meals etc from scratch, which has a bonus - its usually way healthier! I use the freezer a lot, esp for my GF bread. :)
herika, Jul 29, 3:18am
I seem to tolerate the acid free tomatoes ok like you the gums and additives affect me too. I also have to be careful how much corn, shellfish, and greens I eat. For a while I couldnt have honey but seem okay with it now. I actually see it as a good thing I cant have much with additives etc in because they are such bad things anyway :)
herika, Jul 29, 6:18am
bumping for the evening :)
b.j.nichols, Jul 29, 6:46am
How do you know you are not... . . Coeliac? From my understanding, the only way to confirm/ deny Coeliac is by biopsy? ?
gaspodetwd, Jul 29, 6:52am
my husband has the biopsy and though the bloods came back postive, the biopsy was negative. However it was someone new doing it - and they only took one sample. he has NO desire to have another! My two year old had blood work that came back negative - but any of the above foods make her really ill. And she is fantastic as long as she is on the correct diet. the paed suggested we get her retested when she is 5. Oh - adn that she continues on her 'right' foods...
herika, Jul 29, 6:35pm
hi bj nichols I have spoken to Coeliacs who say they often dont have any symptoms so I wonder how they manage to know what to eat and what not to eat. If I eat anything with gluten in it I get the most awful diarrhoea you could imagine and it takes around 3 days for my system to properly heal. So I definately know if Ive eaten anything that upsets me - and it happens very quickly once Ive eaten the offending food, sometimes in 10 - 20 minutes. So there is no way I could eat even the tiniest bit of gluten and not know about it! But I see this as a good thing, because I know for sure when something has gluten in it, then I stay away from that particular food :)
herika, Jul 29, 6:44pm
The official explaination: Allergies, intolerances, and coeliac disease are all different. Allergies affect 7% of children and 2% of adults, and usually involve one or more of: milk, eggs, wheat, soybeans, nuts, and peanuts (legumes). Allergy reactions include asthma, arthritis, runny nose, itching, and rashes.
Most children outgrow allergies within a few years, and a number of adults report that allergies can disappear if they stay away from the offending foods for a year or more. Allergies are potentially fatal if they trigger an anaphylactic reaction. Allergy reactions are caused by the immune system. [Allergies involve IgE antibodies, which are different from the antibodies involved in CD]...
herika, Jul 29, 6:46pm
... Intolerances are unlike allergies in that they have nothing to do with the antibodies our immune systems produce. A food intolerance is a non-immune reaction to food or food additives. Gluten intolerance causes difficulty digesting gluten and exhibits mild symptoms ranging from runny noses and wheezing to digestive upsets such as abdominal pain, bloating, and diarrhea.
CD, also known as gluten enteropathy, is neither an allergy nor an intolerance. Gluten enteropathy causes damage to the lining in the small intestine, which interferes with the absorption of nutrients. Neither allergies nor intolerances lead to this sort of intestinal damage. :)
lil_miss_haley, Jul 29, 7:50pm
I have a gluten intolerence Its not a bad one being that I can have a tiny bit of gluten, but I notice it if I eat say a peice of bread. However I just try to avoid it anyway. Its been so great finding out though, I used to be bloated and gassy everyday and just feel run down. I'm low carb anyway so a lot of the food that I can't have I wouldnt eat anyway. My meals are so much healthier now because they're real foods - meat, vege, eggs, dairy - I love it
melford, Jul 30, 12:25am
#12 - Correction to post 12 Coeliac Disease is a medical condition in which there is a PERMANENTINTOLERANCE to gluten, a protein found in wheat, rye, barley, triticale and dinkle. Oats contain a similar kind of protein. Coeliac Disease is a response from the immune system towards the ingestion of wheat and it causes damage to the inside of the intestines.
frances1266, Jul 30, 3:01am
gluten intolerance Gluten intolerance does cause damage to the intestines.
herika, Jul 30, 4:24am
melford you are correct CD is a permanent condition the post above doesnt say it isnt. An allergy may be able to be grown out of but not CD. :)
herika, Jul 30, 4:36am
Hi lil miss haley I agree, eating real foods without all those additives and preservatives has got to be better for us. We have a vege garden and grow as much as we can ourselves. We dont use any sprays and only use snail bait if we have to, but we dont really like doing that. You sound as if you have yourself all sorted as to what you can and cant eat, which isnt easy to do and can take quite a while, so good on you for that :)
herika, Jul 30, 5:00am
A word about oats Oats have a protein similar to gluten called Avenin. One in 20 people react to it. Due to the high possibility of cross contamination during planting, harvesting and processing many brands of oats do have detectable levels of gluten in them. Harraways in Dunedin are very careful to reduce this problem but never claim theirs are gluten free :)
herika, Jul 30, 5:46am
Other things gluten intolerant people may not be able to tolerate too: soy and anthing with soy/soy products in such as some margarines, nuts, tomato sauce, rice, tapioca, seaweed and any seaweed additive and even some starches and corn. :)
melford, Jul 30, 9:53am
herika - I was referring to your statement CD, also known as gluten enteropathy, is neither an allergy nor an intolerance. Gluten enteropathy causes damage to the lining in the small intestine, which interferes with the absorption of nutrients. Neither allergies nor intolerances lead to this sort of intestinal damage. :)
herika, Jul 30, 6:42pm
It wasnt my statement it was taken from: Excerpt from Gluten-free Friends Fall 1996 (Vol. 2, No. 3) R. Jean Powell, editor Montana Celiac Society 1019 So. Bozeman Ave. #3 Bozeman, MT 59715. :)
herika, Jul 30, 6:45pm
Im one of those people who cant tolerate vege gums. It has the same effect gluten has on me. It is in a lot of gluten free breads which means I can have them and its also in so many foods until I started checking labels I had no idea. Soy is another thing that is in a lot of foods too. Soy lecithin (322) is a common additive. I read somewhere it sometimes comes from eggs! :)
melford, Jul 30, 11:17pm
herika - you are getting your information from a lot of American sites which is unhelpful when applied to our food here, we have different food standards. Many of the overseas sites have a hidden agenda as they are trying to push their products on to the consumer. There are also many different opinions out there and you can usually find one that fits the bill for your purpose. I believe only a trained professional can fathom out what is correct and incorrect.
herika, Jul 31, 12:21am
that is only one American site which I found explained the differences in the different reactions to gluten very well. The reaction to gluten that people with Coeliac disease have is different to the reaction that people who arent Coeliacs but have a gluten intolerance. Some of the symptoms are the same or similar. People who are allergic to gluten have different reactions too, anaphylactic shock being a severe one. Perhaps it would help dispel the confusion if Coeliacs said they had gluten entropy as opposed to gluten intolerance, and people who had an allergic reaction called it a gluten allergy? I dont know if that would help but I do know they are very different conditions and need to be treated as such :)
herika, Jul 31, 12:40am
This info is from a NZ site: www.foodreactions.org Non Coeliac Gluten Intolerance
Many times when a person is screened for CD tests indicate that the disease is not present. This despite that these persons suffer from symptoms upon digesting food containing gluten. This is very interesting or perhaps confusing to many. But put simply, this person may be Non Coeliac Gluten Intolerant (NCGI). It is estimated that around 15% of the world population is NCGI as opposed to less than 1% of Coeliacs.
Gluten consists of many long elastic chains of proteins lined along each other, giving it the characteristics of a dough. Not all of them cause Coeliac disease, but some can cause irritation to the small intestine, enough to hinder the cells of the lining from enzymes production to break down foods.
To confirm if you are NCGI do an elimination diet. Avoid all gluten food for at least two weeks and then introduce it. If symptoms return, and previous tests were negative or inconclusive then you know that you are NCGI.