I think that I might have celiac...but don't know how to get diagnosed without going broke

[BlessedMommy2006]

Quick history: An alternative practitioner diagnosed me with a wheat sensitivity in 2004. I unsuccesfully tried to avoid wheat for awhile and then gave up because I wasn't seeing major effects from it.

My first pregnancy, I had a horrible itchy skin condition that doctors couldn't explain. My 2nd pregnancy I cut out wheat and my skin was great.

I'm now having some unexplained symptoms like nausea (i'm not pregnant or ill), rapid dental decay, etc.

I would like to get tested to see if I'm full blown celiac, but the blood tests, biopsy, etc. cost $700! I can't afford that right now.

Any suggestions for alternate diagnosis methods that don't put me in the poor house?

[Hedwig_Fly]

www.celiacdisease.net/free-blood-screening
through the University of Chicago, on October 10th. It also says there will be a Q&A session.

You might want to check this information out maybe you could get the testing done free.

Good luck - I'm in the middle of a 4 week gluten trial to test for celiac- next week I have the upper endoscopy.

[Pepper44]

The stool sample tests are supposed to be very accurate and they aren't quite as expensive as $700.

This is the place highly recommended on the celiac disease message board I used to frequent.

https://www.enterolab.com/Home.htm

[chaoticzenmom]

the genetic testing costs that much, but you can get antibody testing that is not as expensive. You can go to your dr. or naturapath and ask to have the antibody testing.

What will the diagnosis give you though? You know you're at least extremely sensitive to wheat. You may have damaged villi, but cutting wheat completely will either heal the villi or not. Your cheapest option is to go completely wheat/wheat family-free.

[fruitfulmomma]

I unsuccesfully tried to avoid wheat for awhile and then gave up because I wasn't seeing major effects from it.

Were you only avoiding wheat? Gluten is in other grains including barley, rye, and oats. (General consensus on the oats seems to be that they don't have gluten but that they are very easily cross-contaminated.) Also, cross-contamination can continue to expose you in which case you would not see improvement.

Any suggestions for alternate diagnosis methods that don't put me in the poor house?

Personally, with our daughter, we decided we did not need a diagnosis. If she has either celiac or non-celiac gluten intolerance, the remedy is the same - an absolutely 100% gluten-free diet for life. When we removed gluten from her diet her symptoms (rash all over her face) went away.

IMO, if you can't afford the test, it would still be worth it to give the gf diet another try and see if your symptoms improve.

[BlessedMommy2006]

Originally Posted by Hedwig_Fly

www.celiacdisease.net/free-blood-screening
through the University of Chicago, on October 10th. It also says there will be a Q&A session.

You might want to check this information out maybe you could get the testing done free.

Good luck - I'm in the middle of a 4 week gluten trial to test for celiac- next week I have the upper endoscopy.

Great idea. I live in Michigan so that is doable.

[Asiago]

I agree. Try a gluten free diet for a few weeks and see how you respond.
Then you will have your answer.
Whether it's celiac, food allergy, or intolerance; changing your diet (in this case eliminating glutens temporarily) will give you an answer.
Confirmation would be reaction after reintroduction of the food(s) that were eliminated (gluten grains in this case).

[BlessedMommy2006]

Originally Posted by fruitfulmomma

Were you only avoiding wheat? Gluten is in other grains including barley, rye, and oats. (General consensus on the oats seems to be that they don't have gluten but that they are very easily cross-contaminated.) Also, cross-contamination can continue to expose you in which case you would not see improvement.

Personally, with our daughter, we decided we did not need a diagnosis. If she has either celiac or non-celiac gluten intolerance, the remedy is the same - an absolutely 100% gluten-free diet for life. When we removed gluten from her diet her symptoms (rash all over her face) went away.

IMO, if you can't afford the test, it would still be worth it to give the gf diet another try and see if your symptoms improve.

Yes, only wheat, not all gluten. The practitioner I went to suggested spelt as a wheat alternative and I know that spelt is not gluten free. I've gone mostly without wheat for over a year now.

[fruitfulmomma]

Yes, only wheat, not all gluten. The practitioner I went to suggested spelt as a wheat alternative and I know that spelt is not gluten free. I've gone mostly without wheat for over a year now.

I know there are some non-celiac people who only react to wheat and do okay with other gluten sources but if you did not see improvement with removing the wheat I'd definitely look into the gf diet and see how things go. It can be pretty difficult at first but there are many alternative foods available today that can replace gluten containing foods.

I went gf too because my daughter is still breastfeeding and symptoms I didn't even realize I had started going away and the brain-fog I felt I had been living in for so many years has started to lift. I haven't trialed it because I know my dd reacts but I think I am going to stick to it even after she has weaned.

[Asiago]

That is really bizarre that he would reccomend spelt There are so many great gluten free grains.

I am not sure which section of the country you live but Whole Foods store has a wonderful gluten free selection in the flour isle, also the freezer section, as well as the processed foods.
Wegmans too, I am impressed with their selection of gluten free also. They have breads and muffins in the freezer, dough, etc. The specialty snack isle has a bunch of gluten free in it.

You've probably already seen this, but it's the celiac sprue site with the grains list:
http://www.csaceliacs.org/gluten_grains.php

[Hedwig_Fly]

I don't know the answer for the OP but I am moving forward with additional Celiac testing because I want to know if I'm going to have a life-long issue with gluten that could also affect my children. I personally had been gluten free for about 6 months (although I know not 100% because I still have been going out to lunch a couple times a week and while I try to keep gluten free I'm sure I have been cross contaminated). I did get much better but not all the way. My GI doctor would like to know for sure if it is celiac and at this point so would I.

Now I started having 4 slices of wheat bread a day - 2 in the morning and 2 at night for about 2.5 weeks. I know I am very intolerance based on how I am feeling - I cannot wait to get it back out of my diet. But for me knowing for sure if I'm just intolerant or celiac - is important - to me celiac means never ever again can I have gluten and that I do need to be very concerned about cross contamination. Intolerant would mean I still need to be very concerned but maybe if I deal with my other nutrient deficiency issues it won't be life-long. Also I have 3 daughters who all have some food issues - I'd like to know for sure if celiac is a major concern for them. Oh and there are my parents who both have issues that could be related to celiac and if my testing results in them moving forward to find out too - or at least going gluten free then all the better. However there are moments I'm not sure the discomfort I'm feeling is really worth it - almost there though so I'll keep pushing on.

I didn't really know about the enterolabs testing - if I could do that instead I would have.

[BlessedMommy2006]

Originally Posted by Asiago

That is really bizarre that he would reccomend spelt There are so many great gluten free grains.

I am not sure which section of the country you live but Whole Foods store has a wonderful gluten free selection in the flour isle, also the freezer section, as well as the processed foods.
Wegmans too, I am impressed with their selection of gluten free also. They have breads and muffins in the freezer, dough, etc. The specialty snack isle has a bunch of gluten free in it.

You've probably already seen this, but it's the celiac sprue site with the grains list:
http://www.csaceliacs.org/gluten_grains.php

I thought that he recommended spelt because I was not gluten intolerant, but then on my test report it listed gluten/gliadin as a sensitivity, so I don't know. *shrug* I went to a practitioner who practiced the NAET method of allergy elimination and did electro dermal testing if that helps clarify the situation any.

[kjbrown92]

I guess I'm also wondering why you need to know definitively whether it's celiac vs. a gluten intolerance, if the outcome (avoiding gluten, including cross contamination) is the same. If you have a diagnosis, then you can count the difference in food price IF you itemize your income tax and if you go over whatever the percentage it is for medical expenses. DS, DD2, and I all avoid gluten (and soy, corn, and dairy). DD2 and I have both had a celiac blood test which didn't show anything, but I'm wondering if we'll ever have gluten again anyway, because it's so damaging, whether we "grow out of" our intolerance or not.

[BlessedMommy2006]

Originally Posted by kjbrown92

I guess I'm also wondering why you need to know definitively whether it's celiac vs. a gluten intolerance, if the outcome (avoiding gluten, including cross contamination) is the same. If you have a diagnosis, then you can count the difference in food price IF you itemize your income tax and if you go over whatever the percentage it is for medical expenses. DS, DD2, and I all avoid gluten (and soy, corn, and dairy). DD2 and I have both had a celiac blood test which didn't show anything, but I'm wondering if we'll ever have gluten again anyway, because it's so damaging, whether we "grow out of" our intolerance or not.

I need to know whether I'm actually gluten intolerant or celiac versus just wheat sensitive. I need to have an authoritative diagnosis because my husband will never take all the preventative measures (cross contamination, etc.) seriously unless I have a real diagnosis.

[kjbrown92]

Is the blood test that expensive? Or is that the blood test and the biopsy?

[twilight girl]

Originally Posted by BlessedMommy2006

I need to know whether I'm actually gluten intolerant or celiac versus just wheat sensitive. I need to have an authoritative diagnosis because my husband will never take all the preventative measures (cross contamination, etc.) seriously unless I have a real diagnosis.

I do realize that this is not a helpful comment, but I'm sorry for you, because your husband doesn't sound very helpful at all

If you have been avoiding wheat (and most gluten) for more than a year, you will not likely get an accurate celiac test anyway (from what I understand from what I've read).

We were going to test DD and MIL, but the test sites all indicate that you have to have been eating wheat for the tests to show up right. Just something to keep in mind if you should decide to go through with testing. Good luck

[Pepper44]

I'm 99% sure you don't have to be eating gluten for the stool test.

[LBMarie9]

we did enterolab testing for my son--and he's been off for awhile--I am very careful he doesn't get gluten. .

as for me I was wondering and wanted to know for sure--since my son has a double gene--they agreed to test me--SO after 5 months off gluten I went for the 6 week trial--
however I read somewhere that the equivalent of gluten you needed was 4 slices of bread a day for 6 weeks ---and my gastro told me I only needed TWO--so I only had 2 a day--I wonder if this makes an even bigger difference--ANYWAYS--I FELT CRAPPY--knee joint pain got HORRID(didn't know before my 6 week trial that it was related)--the fog came back--I got very bloated very quickly (but thankfully didn't gain any of the 20lbs back that i lost going off gluten) --tired, fatigue, grouchy--umm yea! and my test came back NEGATIVE (he didn't test for anti-gliadin--didn't think it was needful since the TTG transglu...whatever is the "most sensitive") anyways--so there I was feeling crappy--did this to myself---was it worth it? well I can't turn back--but now I still wonder if I have it and am gluten free again and feeling a LOT better... I too wanteda diagnosis--a lot for others around me--my husband included--I mean when our food bill is going to be a LOT bigger for the rest of our lives--I wanted him not to resent me thinking I just didn't want to be off gluten but that it was needed--
hope this was helpful --my experience and no closer to a diagnosis (but NOT going back on gluten anytime soon)