Have been struggling for years with the symptoms of Celiac disease unbeknownst to me.
When my son was born all the dots leading towards Celiac disease started to connect to this genetic disease because he was extremely allergic to milk and dairy at age eight he is just now eating it again. Anyway 100% sure Celiac runs in our family on my mothers side.
Last year my son and I were tested by an allergist but the test results came back negative because the allergist failed to mention we actually had to be eating gluten or it would produce a false negative.
So we both came back negative of course because of course I cut out all gluten right before the testing. Finally just started a gluten-free diet and my GOD the minute I ate gluten free my symptoms of being tired since age 18 gone! Have not even been on the GF diet and entire month simply shocked. Since this time going to test again first at home here are my questions:
Q1: Which test is better for Celiac disease? The saliva test or the blood test?
Q2: How should can prepare us both to ensure we do not have a false positive again since any of the other more extensive tests outside of these two are really an option at present?
After the test
Q3: When eliminating gluten is it best to eliminate dairy also? We both have at least an intolerance to dairy products.
Q4: Besides Trader Joe's are there any other stores or great online stores that carry Gluten-Free products?
Q5: Are there any other websites that have recipes for Gluten-Free eating?
Q6: Since I prefer to make my own bread what are the best Gluten-Free bread machine mixes or recipes that you have tried?
Q7: How long did it take on average for you being Gluten-Free before you noticed major changes on energy levels and to feel relatively normal again?
Q9: List the best websites you have come across for Celiac disease.
Q10: What has been your biggest challenge in going Gluten-Free?
Q11: Did you notice your allergies and severe Eczema symptoms immediately go away after the GF diet if so how long?
Q12: Somebody else on Yahoo answers mentioned they went to a hypnotist/therapist to help with Celiac does anyone have any information on this?
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Of course add anything else that has worked great for you as well thanks.
3 months ago
Thanks great information, yes aware of the rash we have noticed it as well and the severe itching right before it appears is unbearable can predict it with clockwork exactly where it will appear. Have had the rash since for 14 years and notice the tingling of where the rash will appear approximately 4 hours after eating bread in very large quantities.
My mother was adopted but continues to have moderately severe digestive problems spanning for over a decade so that is what helped to connect some of the dots to Celiac.
Apparently I'm worse and have gone undiagnosed for 19 years. Treating severe eczema for over 5 years and experiencing a severe healing crisis for the last two years, nothing has helped this was the last straw simply just have to go totally GF free.
For financial reasons an internal biopsy can't do presently but blood test is doable because its too important not too.
My mother was adopted but continues to have moderately severe digestive problems spanning for over a decade so that is what helped to connect some of the dots to Celiac.
Apparently I'm worse and have gone undiagnosed for 19 years. Treating severe eczema for over 5 years and experiencing a severe healing crisis for the last two years, nothing has helped this was the last straw simply just have to go totally GF free.
For financial reasons an internal biopsy can't do presently but blood test is doable because its too important not too.
3 months ago
Best Answer - Chosen by Asker
The bottom line is if you feel better off gluten, don't eat gluten. But the more you know about why your body doesn't like gluten, the better you can make decisions about how to manage your health and how strict you need to be with the diet. And having a concrete diagnosis will help you maintain your vigilance and help you convince others that you're not on some fad diet on a whim.
Q1: The genetic test (cheek swab) will confirm whether or not you have the genetic predisposition for the disease. This works whether or not you are eating gluten and is useful if you know you react to gluten, are unable to go back to eating gluten, and want a little more evidence that it could be celiac disease as opposed to some other form of gluten sensitivity. It will also tell you if you do not have the gene for celiac, and therefore, would be very, very unlikely to have celiac disease. However, a positive result would not tell you that you have celiac disease, and a negative result would not mean that your body is okay with gluten.
The blood test will show whether your body is currently mounting some form of immune/autoimmune response to gluten (that you have an active reaction to gluten). But some people have a negative result and still feel much better on a gluten free diet. And few people have a negative result and still have active celiac disease.
Q2: Ask the lab performing the test how much gluten you need to be consuming for how long. Opinions on this vary. (A false negative is still possible even if you have been eating gluten.)
After the test
Q3: If you are already intolerant to lactose, then definitely eliminate lactose for the first 3-6 months on a gluten free diet. Some celiacs will not heal if they are still consuming lactose. After that you could try reintroducing lactose to see if you can digest it. For some, lactose intolerance is temporary and will go away after your intestines heal. For others, it is permanent.
Q4: Most grocery stores now have gluten free sections. There are tons of support groups and sites that will help you find information on where to shop and eat.
Q6: I use Kinnikinnick... because it's very, very easy. Add water, blend, pour in pan, and bake. But I am not the cooking/baking type and haven't tried a whole lot of brands.
Q7: I noticed some improvement fairly early. Remarkable improvement in energy came over months. Full benefit of the diet took 6 months to a year, but it was truly incredible. Felt 70 years younger than I'd felt before and better than I had in 10 years.
Q9: List the best websites you have come across for Celiac disease.
Celiac.com
Celiaccentral.org
Q10: What has been your biggest challenge in going Gluten-Free?
Adapting to a high-maintenance diet. Constant vigilance.
Q1: The genetic test (cheek swab) will confirm whether or not you have the genetic predisposition for the disease. This works whether or not you are eating gluten and is useful if you know you react to gluten, are unable to go back to eating gluten, and want a little more evidence that it could be celiac disease as opposed to some other form of gluten sensitivity. It will also tell you if you do not have the gene for celiac, and therefore, would be very, very unlikely to have celiac disease. However, a positive result would not tell you that you have celiac disease, and a negative result would not mean that your body is okay with gluten.
The blood test will show whether your body is currently mounting some form of immune/autoimmune response to gluten (that you have an active reaction to gluten). But some people have a negative result and still feel much better on a gluten free diet. And few people have a negative result and still have active celiac disease.
Q2: Ask the lab performing the test how much gluten you need to be consuming for how long. Opinions on this vary. (A false negative is still possible even if you have been eating gluten.)
After the test
Q3: If you are already intolerant to lactose, then definitely eliminate lactose for the first 3-6 months on a gluten free diet. Some celiacs will not heal if they are still consuming lactose. After that you could try reintroducing lactose to see if you can digest it. For some, lactose intolerance is temporary and will go away after your intestines heal. For others, it is permanent.
Q4: Most grocery stores now have gluten free sections. There are tons of support groups and sites that will help you find information on where to shop and eat.
Q6: I use Kinnikinnick... because it's very, very easy. Add water, blend, pour in pan, and bake. But I am not the cooking/baking type and haven't tried a whole lot of brands.
Q7: I noticed some improvement fairly early. Remarkable improvement in energy came over months. Full benefit of the diet took 6 months to a year, but it was truly incredible. Felt 70 years younger than I'd felt before and better than I had in 10 years.
Q9: List the best websites you have come across for Celiac disease.
Celiac.com
Celiaccentral.org
Q10: What has been your biggest challenge in going Gluten-Free?
Adapting to a high-maintenance diet. Constant vigilance.
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- Sun you blew it out the water!!! Thank you so much for taking the time to respond. Your answers were so informative and helpful will use all of them. :)
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Other Answers (1)
- All dairy contains gluten so yea it's best if you eliminate it and you shoud see a specialist for your gluten-Free Diet And i think you should go with the blood test
How is celiac disease diagnosed?
Blood Tests
People with celiac disease have higher than normal levels of certain autoantibodies—proteins that react against the body’s own cells or tissues—in their blood. To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed.
Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.
Intestinal Biopsy
If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is performed to confirm the diagnosis. During the biopsy, the doctor removes tiny pieces of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the patient’s mouth and stomach into the small intestine. The doctor then takes the samples using instruments passed through the endoscope.
Dermatitis Herpetiformis
Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease.3 The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease.
DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone. Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet.
Screening
Screening for celiac disease means testing for the presence of autoantibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. However, because celiac disease is hereditary, family members of a person with the disease may wish to be tested. Four to 12 percent of an affected person’s first-degree relatives will also have the disease.4
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