I'm Also Confused And Overwhelmed.

[CanadianSnowflake]

I have been sick off and on for over a year. I finally got fed up and went to my doctor last week and she sent me for celiac testing.

At first I thought there was no way I had it but I was also very ignorant of the disease. When I started reading about it the word celiac seemed to be the missing piece. I actually thought I was depressed and my thyroid was acting up.

I am depressed, exhausted, I'm feeling joint pain (hip on the right side), my lower abdomen feels like there is an elastic around it all the time. There are spasms of pain on my right side, sometimes the pain radiates up my stomach, light headed sometimes, my feet feel like they have pins and needles if I stand on them too long, I go through bouts of diarrhea and then constipation. I have geographic tongue and discovered I was lactose intolerant last november. The lactose intolerance was through self elimination of the lactose. It helped for a bit but I found recently things have gotten worse again....So I went to the doctor.

I guess what my questions are:

1) after the blood tests what happens?

2) What if the blood tests come back negative? Can I chalk it up to a run of bad luck? Are there test for other possibilities such as IBS?

3) If it comes back negative do I still try a gluten free diet and experiment? My husband has MS and I've read that gluten free helps that as well. So it may be worth a try.

4) did you change your diet cold turkey or eliminate what was in the house? How about children? Do I eliminate gluten from their diet or wait and see?

[WheatChef]

There are a lot of people on these boards recently asking for help/advice and it seems like some posts were easily able to slide to the second page without being answered or commented on.

1) Blood tests don't offer a 100% yes or no answer unfortunately and so doctors normally order a few different tests to try to get a slightly more reliable result. This is why the diet-test is so useful, if the quality of your condition is regulated solely by the presence or absence of gluten from your system then you have a gluten-problem. Unfortunately the diet test can take weeks to months to get a good gauge of its results and that's a big reason why people look to the blood tests in the first place. Additionally hidden sources of gluten can confuse and frustrate you during the gluten-free trial and can often times cause people to get jaded with the diet and quit it before they get to real improvement.

2) There is no such thing as a test for Irritable Bowel Syndrome because there is no such actual Irritable Bowel Syndrome disease. The term is simply what doctors use when they recognize that you have bowel problems, but are completely clueless as to the actual causes of it. In medical terms the actual use of the word "syndrome" simply means a collection of symptoms that occur together, but it does not infer any sort of cause or hope of a cure, it just means "stuff happens". If a doctor ever tells you that you have (Random) Syndrome and stops their tests there, that means they are giving up on you.

3) Yes, gluten isn't an essential protein. We don't need it in our diet and we don't fair worse for not ingesting it. The only risks of attempting a gluten-free diet are the frustration of following the diet when the food industry is only slightly catching on to the importance of it and the possibility of getting into better shape by increasing your consumption of unprocessed foods.

4) I personally quit cold turkey, if you're looking for results in x amount of time then you can only really start your first day of actually being on your diet when you finally quit all sources of gluten. Take gluten containing pantry items that will store for a long time and move them to a less frequently accessed part of your kitchen/house and Ziploc baggy all your wheat flours in case you end up not needing the diet after all. It's probably easiest if you all take the gluten-free challenge together so you won't have to worry about there being two types of meals and possible cross contamination between the two.

[sb2178]

  On 4/22/2010 at 5:50 PM, WheatChef said:

There are a lot of people on these boards recently asking for help/advice and it seems like some posts were easily able to slide to the second page without being answered or commented on.

1) Blood tests don't offer a 100% yes or no answer unfortunately and so doctors normally order a few different tests to try to get a slightly more reliable result. This is why the diet-test is so useful, if the quality of your condition is regulated solely by the presence or absence of gluten from your system then you have a gluten-problem. Unfortunately the diet test can take weeks to months to get a good gauge of its results and that's a big reason why people look to the blood tests in the first place. Additionally hidden sources of gluten can confuse and frustrate you during the gluten-free trial and can often times cause people to get jaded with the diet and quit it before they get to real improvement.

2) There is no such thing as a test for Irritable Bowel Syndrome because there is no such actual Irritable Bowel Syndrome disease. The term is simply what doctors use when they recognize that you have bowel problems, but are completely clueless as to the actual causes of it. In medical terms the actual use of the word "syndrome" simply means a collection of symptoms that occur together, but it does not infer any sort of cause or hope of a cure, it just means "stuff happens". If a doctor ever tells you that you have (Random) Syndrome and stops their tests there, that means they are giving up on you.

3) Yes, gluten isn't an essential protein. We don't need it in our diet and we don't fair worse for not ingesting it. The only risks of attempting a gluten-free diet are the frustration of following the diet when the food industry is only slightly catching on to the importance of it and the possibility of getting into better shape by increasing your consumption of unprocessed foods.

4) I personally quit cold turkey, if you're looking for results in x amount of time then you can only really start your first day of actually being on your diet when you finally quit all sources of gluten. Take gluten containing pantry items that will store for a long time and move them to a less frequently accessed part of your kitchen/house and Ziploc baggy all your wheat flours in case you end up not needing the diet after all. It's probably easiest if you all take the gluten-free challenge together so you won't have to worry about there being two types of meals and possible cross contamination between the two.

If bloodwork comes back negative, you can also have an endoscopy done anyway. Particularly if you have any sort of nutritional deficiency combined with current problems. There is always lab error, and a subset of people do not test positive on the test due to a genetic quirk (IgA deficiency).

Cold turkey. Definitely cold turkey. But not before finishing up any testing.

[boysmom]

  On 4/19/2010 at 11:33 PM, CanadianSnowflake said:

3) If it comes back negative do I still try a gluten free diet and experiment? My husband has MS and I've read that gluten free helps that as well. So it may be worth a try.

4) did you change your diet cold turkey or eliminate what was in the house? How about children? Do I eliminate gluten from their diet or wait and see?

Others have responded to the more technical questions, so I'll just address these two.

3. Given your health and your husband's MS, I would say a trial of the diet (after any testing you wish to have is done) would definitely be worthwhile. If it doesn't help you can always go back to eating it, but if it does it can make a world of difference in function and feeling.

4. Since I was the only one sick here, I went cold turkey and my family finished off the gluten-y foods still at home. Because there is such a strong genetic link to celiac and gluten sensitivity and some of our children had symptoms that *could* be gluten related, we had them all give it a trial and then decide for themselves (except the youngest). In our case, my husband can't tell much of a difference whether he eats it or not, maybe slight sluggish/tired feelings.

My oldest 3 sons all said they felt better without it, but 2 of the 3 went back to it once our trial was over. The oldest (18) still eats gluten when he's away from home, second son (16) decided to drop it again when he realized it did give him a lot of gas, and third son (14) has found that accidental glutenings cause some nasty acne so he tries to stay away from it even when we're out. My fourth son (10) says he can't tell a difference, but he does seem more emotional when he's eaten gluten. We've allowed him to decide for himself for now but I expect in time he may decide it isn't worth it. My youngest (8) has the most severe reactions: extreme behavioral problems (tantrums, defiance, irrationality) followed in a few days by diarrhea. Most of the time he is careful himself to avoid it, but at times he asks for gluten goodies or wants to eat at church dinners, but because we all have to live with him he is not allowed for now. My oldest had similar behavior problems at that age, so as this son grows up and gains some self-control we may give him the option later to decide.

I feel like at the minimum, all my sons are aware of gluten and other dietary sensitivities, so if at some future date they develop symptoms they'll know where to start looking. That's a good leap ahead of where I was when I started feeling bad. Hopefully it will spare them years of feeling crummy all the time.