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worried_bro

My Sisters Test And Lack Of Symptoms

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Ok here is the deal my sister is a type 1 diabetic she had some blood test done a few weeks ago the were routine test she wasnt having any problems. I am pretty worried because a week ago my sisters nurse called and said that my sister was going to have a biopsy when we asked why she said she tested positive for celiac it was a shock to all of us because we had no idea and more importantly my sister has NO symptoms.

She got the biopsy done today and when i asked the doctor what her blood test results were he simply said she was 25. 25 what anti bodies? He said the average person is suppose to have less then 1. I was so confused and worried that I didnt have time to think everything was going so fast.

The doctor was confused because he said "your people never get ceiliac disease" I guess somalis or africans in general don't get celiac as much. Also NO one in our immediate family has celiac or has any of the symptoms.

Regardless my sister has no symptoms 95% of what we eat has wheat in it or gluten. We eat pasta on a regular basis probably 3 times a week if not more. I would imagine someone who is positive would get sick after eating gluten. I constantly ask if she has any stomach problems and she says no she hasn't changed her diet at all and she feels perfectly fine she's tall and she's normal weight.

After the biopsy the doctor said that everything looked "great" what the hell does that mean? its just hard because my sister already has diabetes an I've seen how much she has struggled with it and adding celiac would just make things harder.

Has anyone been diagnosed with celiac diesese that didnt have any symptoms? Also what are the normal levels of anti bodies?

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Ok here is the deal my sister is a type 1 diabetic she had some blood test done a few weeks ago the were routine test she wasnt having any problems. I am pretty worried because a week ago my sisters nurse called and said that my sister was going to have a biopsy when we asked why she said she tested positive for celiac it was a shock to all of us because we had no idea and more importantly my sister has NO symptoms.

She got the biopsy done today and when i asked the doctor what her blood test results were he simply said she was 25. 25 what anti bodies? He said the average person is suppose to have less then 1. I was so confused and worried that I didnt have time to think everything was going so fast.

The doctor was confused because he said "your people never get ceiliac disease" I guess somalis or africans in general don't get celiac as much. Also NO one in our immediate family has celiac or has any of the symptoms.

Regardless my sister has no symptoms 95% of what we eat has wheat in it or gluten. We eat pasta on a regular basis probably 3 times a week if not more. I would imagine someone who is positive would get sick after eating gluten. I constantly ask if she has any stomach problems and she says no she hasn't changed her diet at all and she feels perfectly fine she's tall and she's normal weight.

After the biopsy the doctor said that everything looked "great" what the hell does that mean? its just hard because my sister already has diabetes an I've seen how much she has struggled with it and adding celiac would just make things harder.

Has anyone been diagnosed with celiac diesese that didnt have any symptoms? Also what are the normal levels of anti bodies?

Hi, Worried bro, your sister is lucky to have such a caring brother!

The normal level of antibodies varies from lab to lab, as each lab can set their own reference range, but in general, healthy people do NOT produce antibodies to gluten, nor gluten-triggered antibodies to their own bodies, which is what the celiac blood tests test for.

The biopsy has been considered the "gold standard" of diagnosing celiac for the past 50 years or so, because celiac disease is actually defined by the kind of intestinal damage that biopsies look for. However, since celiac was originally defined, the blood work has become much more sophisticated, and is now thought of as more sensitive and accurate than the traditional biopsy. Still, most doctors rigidly adhere to the practice of only diagnosing celiac after a positive biopsy.

I don't know about Somalis /Africans, but I do know that Asians who have lived in the West, and adopted the typical Western (gluten-filled) diet have a celiac rate that pretty much equals that of Europeans and Americans--after only 1 or 2 generations! (Celiac disease is practically unheard of in Asian countries.)

There may be many reasons for this; the most obvious reason, of course, is that the American/European diet is SO gluten-heavy. Every meal not only contains gluten, but is heavily gluten-based.

It is certainly possible that your sister could have celiac disease and have no symptoms. This is called "silent" or "latent" celiac disease.

It is also possible that there was an error with her blood work. However, I think that the fact that she has type 1 diabetes is a red flag that she is at risk for celiac, because type 1 diabetics IS linked with celiac. I know my endocrinologist routinely tests ALL her diabetic and thyroid patients for celiac, because she sees them together so often.

Again, this is complicated. It doesn't necessarily mean that one causes the other. I think it's more likely that they share some genetic predisposition, and/or they may have the same environmental triggers.

Many diabetics do report that their diabetes is much easier to manage if they stop eating gluten. Certainly, diabetics are usually counseled to follow a low-carb diet, but for some, it's not the carbs that are the problem, it's the gluten.

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celiacs does not have to cause digestive symptoms. undiagnosed gluten intolerance wreaked havoc on my body. i have blood sugar and thyroid problems that seem to be tied to it. i also think that is why diabetes amongst other problems runs in my family is since the real problem had gone undiagnosed for generations.

i am surprised they found she tested positive for celiac's when many of us it took years to get the right test and often we have to argue to get it. you and your sister could go back to the doctor. you have a right to copies of the test results. you also have the right to ask questions and get answers. what made them test in the first place? what does a good biopsy mean?

while the book's approach is a turn off for me, the gluten effect connects a variety of symptoms to gluten intolerance, sensitivity, and celiac's.

i would not be convinced or worried because usually people in one's ethnic or racial group usually do not have celiac's diseases suck in that they do not discriminate they can strike anyone. people can be asymptomatic celiac's sucks because it can silently cause a lot of damage. or it can be symptoms that most people would never connect to the disease.

biopsies have false positives so i would not be convinced there is not damage from the gluten. nor would being symptom free make me think it is safe for me or ur sis to eat gluten.

one does not have to get sick after having gluten some people do which helps them make the connection and know foods to avoid because of cross contamination. however, i do not usually get symptoms that are easily tied to what i ate - and i know i am not alone in this.

if she has diabetes i would think getting rid of gluten would help since do not carbs spike blood sugar. i think her body is screaming at her to stop having gluten. i fear that if she keeps having gluten she will be like my family and get something worse. i think she should strongly consider going gluten-free.

i do not know about celiac antibodies but with thyroid hormones any amount is not good and indicates the body attacks itself.

i highly recommend dr kharrazian's book see below.

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Has anyone been diagnosed with celiac diesese that didnt have any symptoms? Also what are the normal levels of anti bodies?

*raises hand* I had no gut symptoms (that I was aware of) and after diagnosis, I still really don't get gut symptoms from celiac disease aside from some mild constipation if I get gluten contamination many days in a row.

Here is what I've read, although it's been a while and I never recorded down where I read this, so it's probably worth checking out.

- I've heard that diabetes can mask the symptoms of celiac disease, and that's one of the reasons that many diabetics are not diagnosed.

- I've heard that more celiacs being diagnosed now do NOT have gut problems from eating gluten.

- The idea that celiac disease is rare in those who are not of European descent is, as I understand it, pretty much based on doctor reporting, which tends to be in the category of: we don't have that disease here, so we don't test for it, so almost no one tests positive so see, we don't have it here! ;) I recall hearing of a recent study in Israel to test that theory, and the jewish population tested in Israel came up with about the same numbers as the Europeans, so that idea may be disproved over the next decade or so.

- with regards to the biopsy - if you can find out about how many biopsies were taken, that would be a good idea. According to the celiac disease experts, doctors should take 4-6 biopsies during the endoscopy to accurately rule out celiac disease, because the damage can be invisible to the naked eye, and it can be patchy. So biopsy the wrong patch, and everything looks fine.

- with regards to the blood work. It would be a really good thing for your sis to check out some of the recent research, if she can. Get a copy of her bloodwork, definitely. There was a study - tried to find it, epic fail, but could probably google for it - done in the last few years on people with positive blood and positive biopsies vs. positive blood and negative biopsies. Both groups showed comparative problems metabolically, like not digesting sugars/fats properly, that sort of thing. The doctor involved speculated that the blood test may be positive FIRST, the biopsy positive second, if a disease is caught in the early stages.

That's the big problem, really. The biopsy doesn't find something that IS celiac disease, not like a germ or a bacteria, you know? It just finds evidence of damage. If the body isn't damaged ENOUGH, then the biopsy is negative, even if your sister has celiac disease. And some people seem to start reacting to to gluten with their antibodies before their intestines are damaged as much.

It's a reason that a lot of people here will say things like: try the diet, even if the test is negative, just for a few months. See if you feel better.

Also, for symptoms? Here's a list of symptoms that me, my family members, and others I've spoken to have had that are NOT gut related, but do have to do with gluten ingestion and celiac disease. It can be some or all of these.

- frequent illness, frequent complications from illness

- exhaustion. Sleeping very deeply OR insomnia

- joint or soft tissue problems, pain, or frequent injuries

- excessive clumsiness, vertigo, tingling and numbness in extremities (you can see why this is often missed in diabetics, yeah?)

- depression. Issues managing anger or anxiety. Excessive irritability. Anxiety attacks.

- mental issues involving memory, concentration, fuzzy headed feeling sometimes.

- irritation involving the senses, like lights are too bright, sounds and crowds are overwhelming. Bitter or sour tastes can be too strong.

- ADHD like symptoms. OCD-like problems.

These aren't all of them, but they are some of the things you'll find in people who don't have the gut issues, and even in those who do.

Also, if your sis does go off gluten, and it helps, you probably want to think about getting tested too. If there is a celiac in the family, 1 in 22 of the rest of the family will likely have it, too.

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