Unsure Of Results

[Guest watermanlee]

My daughter, husband, and myself have all tested positive for a "low sensitivity" to wheat(RAST Testing). After these results, the physician suggested that we have further testing for Celiac Disease. My blood work was negative for the first two things, but the part of the test that indicates intestinal damage was a "high-negative". I guess the normal range is 0-18, and I had an 18.9. This was described to me by the physician as being "essentially negative". That is to me inconclusive results. I have been told by the physician to submit a stool test to "EnteroLab" I have the test kit, but not done it. However, my 7 year old daughter was given the same blood test. She scored a 79 on the first thing, and negative on the other two. (I appologize that I don't know the names of the test, Iga or something) I was told that she is definately sensitive to Gluten. Please give me some advice on what to do next. I have removed Gluten completely from my daughters diet, and I am on the fence about what to do for myself. I am on and off of a Gluten free diet, but, I think I need to make a decision.

I thought this was a hereditary disease, and that would mean someone else in the family must have it. Is this true? Please explain how that works.

[jane3]

My daughter, husband, and myself have all tested positive for a "low sensitivity" to wheat(RAST Testing). After these results, the physician suggested that we have further testing for Celiac Disease. My blood work was negative for the first two things, but the part of the test that indicates intestinal damage was a "high-negative". I guess the normal range is 0-18, and I had an 18.9. This was described to me by the physician as being "essentially negative". That is to me inconclusive results. I have been told by the physician to submit a stool test to "EnteroLab" I have the test kit, but not done it. However, my 7 year old daughter was given the same blood test. She scored a 79 on the first thing, and negative on the other two. (I appologize that I don't know the names of the test, Iga or something) I was told that she is definately sensitive to Gluten. Please give me some advice on what to do next. I have removed Gluten completely from my daughters diet, and I am on the fence about what to do for myself. I am on and off of a Gluten free diet, but, I think I need to make a decision.

I thought this was a hereditary disease, and that would mean someone else in the family must have it. Is this true? Please explain how that works.

I am in a similar situation. I had never heard of celiac disease until three years ago when my adult son was diagnosed. I have a long history (35 years) of digestive difficulties, but my blood testing, like yours, came out high-negative, and an endoscope showed no damage to my villi. However, in recent months, my other adult son was diagnosed with celiac disease. I was referred to a genetics specialist who said that about 30% of the population have the genetic marker for celiac disease, but most don't develop the disease. My decision was to go gluten-free and I feel better, although I don't have the disastrous results of an error that my sons have. If your young daughters are gluten-free, the whole family might as well be, just for simplicity.

If you're going to have the Enterolab test, you ought to do it right away. Some tests will give a false negative if you've been gluten-free. I think that may have influenced my testing.

[Guest watermanlee]

I am in a similar situation. I had never heard of celiac disease until three years ago when my adult son was diagnosed. I have a long history (35 years) of digestive difficulties, but my blood testing, like yours, came out high-negative, and an endoscope showed no damage to my villi. However, in recent months, my other adult son was diagnosed with celiac disease. I was referred to a genetics specialist who said that about 30% of the population have the genetic marker for celiac disease, but most don't develop the disease. My decision was to go gluten-free and I feel better, although I don't have the disastrous results of an error that my sons have. If your young daughters are gluten-free, the whole family might as well be, just for simplicity.

If you're going to have the Enterolab test, you ought to do it right away. Some tests will give a false negative if you've been gluten-free. I think that may have influenced my testing.

Thank you for your support

My mother also has symptoms of celiac, and I have numerous symptoms from the fatigue, joint pain, insomnia, migraines and cluster migraines, acne, and all of the stomach problems. I am also allergic to Soy, corn, rice, potatoes,egg, milk and numerous other things. So, the dilemma I have is that most of the alternative foods that replace the gluten products are made with these ingredients as a substitute. (OH, did I mention I am also allergic to almonds!) This is why I want to be absolutely positive if I am allergic, because my diet would be extremely limited. I don't want to go through all of this if I really don't have celiac disease. Also, only one of my daughters has been diagnosed with celiac disease, the other is not allergic to anythingisn't she the lucky one! OH, another thing, I was on a wheat free diet when the Celiac panel was done. I had a high-negative in the part of the test that determines the "villious atrophy" If I had a nearly positive result in this test, maybe the soy or milk were the culprits and not the gluten, as I have learned on this web site, that they also damage the villi. But again, how can I be sure?

[happygirl]

you will have many, many alternatives if you are found to have Celiac Disease (which is an autoimmune disorder-not an allergy). There are lots of rice flours, potato flours, bean flours that you can use separately or mixed together. Luckily, many of the manufacturers recognize that people with one intolderance have others. I haven't used them, but the brand Miss Roben's has a lot of non-allergenic products (I just saw them at the store the other day)

I would recommend getting copies of the blood work that your family had done for your own files. I would also try the enterolab. Go with your gut. If you really need to know, go back to consuming gluten and then have the regular blood tests and an endoscopy/biopsy done. For the most part, unless you are seeing one of few (as in, a handful or so) of the Celiac experts in the country, many doctors are not fully educated about Celiac.

Good luck!!!

[Guest watermanlee]

you will have many, many alternatives if you are found to have Celiac Disease (which is an autoimmune disorder-not an allergy). There are lots of rice flours, potato flours, bean flours that you can use separately or mixed together. Luckily, many of the manufacturers recognize that people with one intolderance have others. I haven't used them, but the brand Miss Roben's has a lot of non-allergenic products (I just saw them at the store the other day)

I would recommend getting copies of the blood work that your family had done for your own files. I would also try the enterolab. Go with your gut. If you really need to know, go back to consuming gluten and then have the regular blood tests and an endoscopy/biopsy done. For the most part, unless you are seeing one of few (as in, a handful or so) of the Celiac experts in the country, many doctors are not fully educated about Celiac.

Good luck!!!

Hi LauraJ,

I don't know if you had read the response to Jane,it may have not been there when you responded. I am allergic to: corn,rice, soy,potato, almonds and some other rediculous foods. I have a hard time deciding to go the gluten free route, because it would be nearly senseless to remove one offender, and not the other 10 or so. I have an enormous decision to make. I have removed all gluten from my little daughters diet, because if I still allowed her to eat it would be like poisoning my own child. For myself, well, you know how it is. Why do people drink alcohol, or smoke cigarettes? It is harmful, but they enjoy it, and it is very hard to stop. I feel like that.

[happygirl]

Hey Watermanlee-I apologize for the oversight! I guess I zero'ed in on the part about being allergic to almonds and thought immediately of the stuff I had seen the other day at the store. You definitely do have a lot on your plate in terms of finding things to eat....sorry that my info was not helpful at all. Hopefully you will find some answers. Good luck..... xoxo

[aikiducky]

One thing though is that all the other allergies or intolerances might be a result of the gluten intolerance, and if you went gluten free, maybe after your body started healing you might be able to tolerate more foods again? Not saying that that is guaranteed to happen but it's a possibility, and in that case it would be a pity to not even try the gluten free diet, wouldn't it?

Pauliina

[jenvan]

Thank you for your support

My mother also has symptoms of celiac, and I have numerous symptoms from the fatigue, joint pain, insomnia, migraines and cluster migraines, acne, and all of the stomach problems. I am also allergic to Soy, corn, rice, potatoes,egg, milk and numerous other things. So, the dilemma I have is that most of the alternative foods that replace the gluten products are made with these ingredients as a substitute. (OH, did I mention I am also allergic to almonds!) This is why I want to be absolutely positive if I am allergic, because my diet would be extremely limited. I don't want to go through all of this if I really don't have celiac disease. Also, only one of my daughters has been diagnosed with celiac disease, the other is not allergic to anythingisn't she the lucky one! OH, another thing, I was on a wheat free diet when the Celiac panel was done. I had a high-negative in the part of the test that determines the "villious atrophy" If I had a nearly positive result in this test, maybe the soy or milk were the culprits and not the gluten, as I have learned on this web site, that they also damage the villi. But again, how can I be sure?

This highlighted part, above caught my eye. Wheat is the most common source of gluten, so if you were wheat free...that definitely could have affected your test results. If you are not eating gluten in a 'regular' type diet, accurate results can not be expected. It would be really helpful to know more about your daughter's test results. I would get a copy of her results. Knowing which on the panel was high and which others were low can make a difference. There several different types of scenarios where people have unusual test results and getting a diagnosis can require an extra step. However, some folks still have inconclusive test results, but the dietary/symptom results confirm gluten intolerance for them. Also, it has been shown in a few studies that milk can seemingly causes villious atrophy in some people, but this is pretty rare. As Pauliina mentioned, a host of food intolerances/allergies can be attributed to Celiac in some people--myself as one example. I guess you could try several things--a rotation diet or going on a full-gluten diet and getting retested again. Frustrating decisions...wish it could be cut and dry for you! Also, if your one daughter has Celiac, you will need to keep an eye on your other...she still could develop it as she grows older. We'll hope not!!