Hi. Newbie Here! Wondering If I Have Celiac.

[nucci]

Hi everyone. I am 31 years old 10 months post partum and have been suffering from a range of symptoms since about 5 months post partum. Previous to my son being born I suffered a miscarriage and I also lost a twin in my recent pregnancy. I have hypothyroidism (Hashimotos), diagnosed about 10 years ago. My mother has celiac, diagnosed about 2 and a half years ago. She recommended that I get tested and I had the immunoglobulin (sp?) tests. Doctor told me I was negative and I felt well at the time (2 years ago) so I did not go further. I began doing some research the other evening and found this message board. It was then that I began to think that maybe I do have celiac.

I have suffered from mild depression most of fmy life. I developed PPD after my son was born. At about 5 months pp, I contacted my ob because I was having those familiar low thyroid symptoms: aches, fatigue, bloating. I was SURE that my blood test would reveal that I needed more synthroid. My thyroid hormones were fine. I couldn't believe it. I chalked it up to exhaustion.

I feel that every day gets worse and worse. I went to a wedding last night and barely made it through the night. I looked into Enterolab and am going to get tested. At first I thought that I would wait for the test resluts before I began the diet, but I am in so much pain that I am hoping the diet will start to heal me. Here are my symptoms:

deep aches and pains in my boes and stiffness and pain in all my joints

pins and needles/tingling in my hands when I wake up

aches and pains in my feet

bloating

flatulence

fatty stool

having to run to the bathroom about 3x per week

dark circles under my eyes

I'm beginning the diet today. What do you think? Thank you very much for your input

Lisa

[Guest nini]

I think there is a very strong possibility you have Celiac, or at the very least, Gluten Intolerance which will eventually lead to Celiac. You are wise to go ahead and try the diet to see if it helps. Positive dietary response is THE most valid diagnostic tool. There are still too high of incidences of false negatives on the blood tests and the biopsies (they just aren't sensitive enough and are only looking for the gastointestinal manifestations of gluten intolerance, not anything else). As long as you aren't planning to go back and do more blood tests or biopsies, I see no reason to not go ahead and start the diet 100% and keep track of your symptoms. You may notice improvement right away, it may take a while (6 months or more) but stick with it. Especially with your mom having it. Good luck and welcome to the board.

[CarlaB]

It is very possible that you triggered it with your pregnancy but didn't have it last time you were tested. If you want conventional testing for celiac, then DO NOT start the diet you're finished with the testing. If you will be satisfied with dietary response, a very valid diagnostic tool, then go ahead with the diet and see how it goes.

[Nancym]

I also had that crushing fatigue that felt like hypothyroid and it has mostly lifted after going Gluten free, sticking to a healthy low carb diet (lots of veggies, some fruits, plenty of good protein) and getting off of milk products. The last piece of the puzzle for me seems to be getting some vigorous exercise.

I wish you luck!

[par18]

Hi,

I think starting the diet would be an excellent idea but only if you are willing to be 100% compliant. If this is your problem then I would expect you to see positive results soon. Good luck.

Tom

[daffadilly]

Good for you for checking into this. Getting a negative blood test caused a lot of people to suffer needlessly for years. Hopefully other people that have gotten a negative blood test will also figure it out.

I would quit eating gluten immediately, order the tests from enterolab, including the gene test. If you have two genes then you have passed one to each of your kids. Personally for my family Enterolab is good enough for us, although my sister did get a positive blood test she is also testing thru enterolab to get the additional information re dairy, genes, absorbtion etc. I have a grandson that had a positive blood test, but was referred to a GI for additional tests, that was never followed up with due to the resistance of my son, the child also tested postive with enterolab & with two DQ1 genes. Now his growth doctor has tested him again for the blood test, we are awaiting the results, in the meantime I have sent his sister's testing into Enterolab. My son is refusing for them to be gluten-free because they were gluten-free for 6 months last year (& major health improvements) and my son said it was "ruining his life". I know he is ..... fill in the blank. But my son thinks he is right because no doctor has said that his son should be gluten free, just that they want to do further tests. Also, when they got the enterolab results they said "oh, it is only gluten intolerance which will not do any damage to him..." & "look his test for gluten is only 20 when it should be less than ten, that is not too bad" I find it amazing, but so true, that a child will take some stressed our stranger's advice that is just trying to finish up their day so they can go golfing, instead of his mother.

I would encourage anyone that is reading this not to take a negative blood test as meaning anything. This is your health & it can be affected in a serious way. Of course for those wanting to keep their heads stuck in the sand it is a good excuse to do nothing.

I am sorry for your loss and for the health problems that you have had. & in my opinon you have probably had it for a long time and to borrow an MS phrase you probably just had a "flare" with the pregnancy. Especially if you turn out to have DQ1 genes, it is almost a given that you have had effects from gluten for a long time, the common GI symptoms sometimes do not show up until your body is worn down when you have the DQ1 genes.

[rez]

I would just go off diet response and maybe do a gene test. With your family history of Celiac, diet will probably give you a clinical diagnosis. You could do Enterolab, but I don't think it's 100% neccessary. Good luck! Remember, the proof is in the pudding.

[Amooliakin]

& "look his test for gluten is only 20 when it should be less than ten, that is not too bad"

That is outrageous! My daughters test was only a tiny bit above normal and our GI doc still reccomended the biopsy which showed that my daughter DOES have Celiac....

[Rebecca47]

When I was diagnosed, I had dirreha for 2 weeks non stop so i called the doctor. She did some test on my stool to see if I had a parasite, but quickly called me and told me more test were needed. I was told to eat like I have all my life and in the morning I went and got tested, then went to her office and she told me I had CS. My numbers were thru the roof there wer 65 on one and 60something on another . Just think I was eating Oatmeal every day. Now on gluten-free diet for 3 months my numbers are 3 and 2 and all others are good. my bone density test came back very bad, and I am still anemic, which I have been on and off all my llife. I had problems as a child but they never figured it out. I even had gone to a gastrointerolgist? spelled wrong i know. anyway to be tested you cant be on a gluten-free diet or the test won't work. Good luck, its hard at first but its getting better.

Rebecca

[nucci]

HI.

I just would like to thank everyone for all of your suggestions and sharing your personal experiences. I know that celiac is more commonly diagnosed these days than it used to be, but it's funny how people are still ignorant of the disease or look at me strangely when I mention my mother's diet. I was gluten free yesterday and continuing today. Thanks again.