Help; Don't Know If Cd (long)...

[trimummy of 2]

wow, this website has been a godsend...

decided to sign up and post b/c it seems like you all have so much experience dealing with a lifetime of celiac disease and/or uncertainty about celiac disease. just the uncertainty is driving me BONKERS. BONKERS!!!!!!!

this will be long...............

i have been experiencing gi etc symptoms since giving birth 10mos ago that make us lean toward celiac disease. HOWEVER - no definitive answers from labwork. here's the scoop....

Nov. 2004 - gave birth to baby boy (beautiful i might add )

*No dairy, eggs, soy, nuts, seafood in MY diet due to his food allergies (i nurse him)

*ate lean meat, LOTS of fruits & vegetables, occasional starches (pasta once every 1/2weeks), but lots of oats w/ wheat bran/w.germ

*had abdominal distension, bloating, LOTS of gas/flatulence, horrible foul odor (my poor husband), occasional cramping, loose stool

*Thought the increased stool frequency and awful gas was due to the increase in fiber in the diet. Retrospectively (having experienced more “normality” after abstaining from gluten), I see how abnormal my bowel habits and other symptoms were.

***Received ultrasound in Feb (prior med group thought i had a hernia) – showed lots of gas, bowel, and some dilation of the small intestine, neg otherwise

April 2005:

*son fell off the weight chart completely, so in may we started him on solids at 5mos. we were worried sick.

May 2005 - July 2005:

*i ate same as previous, but increased starch intake (pasta, bagels) due to my increased triathlon training load.

*symptoms became more severe, with onset of loose large volume diarrhea notable for urgency, borderline fecal incontinence during runs, and extremely painful cramping and bloating/gas. Gas has had foul odor, stools float, and have lots of undigested food in them. Cramping pretty much put me on the couch all day (tough w/ 2 young kids), and doesn't stop when the diarrhea stops.

*these symptoms have seemed to wax and wane – be intermittent, with 2-4 days every week experiencing these "flare ups", and then things calm down, back to the more mild baseline (just distention, bloating, and gas).

July 2005 - Aug 16:

*moved due to husband's job

*in the beginning of july -stopped gluten in the diet - hubby is an MD - one day, said, "hey, just for the heck of it, why don't you stop eating anything with gluten in it, and just see what happens". PRESTO....

*now had a diet without gluten, dairy, eggs, soy, nuts, or seafood. ugh!!!!!

*diarrhea and cramppping symptoms totally resolved within a week, only left with baseline.

*became more engorged, son started gaining lots of weight

Aug 17:

*saw an internist, got labwork done

*tTG = neg

*IgA = neg

*IgG = pos

*other bloodwork = neg for malabsorb., anemia, etc.

*creatine & liver stuff a little off - MD thinks may be just due to my high training levels, but more labwork is being done.

*i have an appt with a GI doc in a couple of weeks.

*ever since.....

have tried gluten again, only to react very dramatically within 24-48hrs with the same gi symptoms. it is obvious i am very affected by the presence or absence of gluten in my diet. it takes another 48-72 hours for the symptoms to start to diminish.

This whole soap opera has been exhausting and frankly, just downright depressing to me. I am on the verge of breakdown. My MD will be taking more labwork from me, including repeat antibody testing. I have been off and on gluten during august, and have only been STRICTLY off gluten for a week now. when i am off, and feel no symptoms, i sometimes think - am i imagining this? and then i go on gluten again and am nearly non-functional on the sofa all day, my symptoms are so bad, and exhausting, and i remember again what it's like.

ques:

1. would being off gluten for only 1.5 mos affect the antibody and other blood results? i read that stuff sticks around for months.

2. anybody hear anything about undiagnosed celiac disease in a mom affecting her milk supply? or would my son actually have it?

3. Would being back on gluten for 10days before the repeat tests (i will get them in 2 weeks) affect the results? Should I do that?

This situation is just causing me so much anxiety. I have a 1/2 Ironman this weekend, but my head is just into this situation, I feel so depressed by this. I know there are folks in my extended family that think I'm just imagining this.....I feel like the only person in the world who believes me is my husband. Luckily, I am getting terrific medical care, and they have not ruled ooout celiac disease at all. It's just the waiting that kills me. I know that ideally, I need to go on gluten for 3+ mos, then get everything tested w/biopsy. But considering my son's reaction, I just can't do that until I stop nursing him, and plus, my diarrhea/cramping symptoms are so profound when I go back on gluten that I don't know if I will be able to handle 3mos of that. Hubby thinks it's celiac disease manifesting it's ugly head, triggered by childbirth for some reason. I just don't want to be a lab guinea pig for a year and then just get diagnosed with IBS b/c they "don't know".

I know you are not doctors, but any help, or even just reassurance would be so wonderful.....this is really getting me down. Thank you for any responses!

[nettiebeads]

Sounds like celiac disease to me. You know, if it looks like a duck, quacks..... The fact that you feel so much better w/o gluten means either severe gluten intolerence or celiac disease. The D you discribed certainly fits in with the celiac disease. And of course if you are still nursing, you have to take care of your body for your son's sake. Why do you need an official dx? I never got one from my gp, I mean official dx. He told me to cut out gluten; I went gluten-free, my D stopped, ergo celiac disease. But yours are pretty much the classic symptms and it is not uncommon for celiac disease to rear its ugly head during or immediatly after pregnancy.

[Carriefaith]

Welcome to the board! It definately sounds like you could have celiac disease or a wheat/gluten intolerance or sensitivity. You have had a positive dietary response, which means that your body cannot tolerate it. Pregnacy is a trigger for celiac disease, which makes me think that you might be celiac.

1. would being off gluten for only 1.5 mos affect the antibody and other blood results? i read that stuff sticks around for months.

I'm not sure about this, I have also read that antibodies can stick around for awhile (obviously if you had one positive result IgG); however, being off the gluten could have affected the other tests.

2. anybody hear anything about undiagnosed celiac disease in a mom affecting her milk supply? or would my son actually have it?

You son could have celiac disease (if that is what you have) since it is genetic.

Would being back on gluten for 10days before the repeat tests (i will get them in 2 weeks) affect the results? Should I do that?

It would be better than not going back on it, since the result may be more accurate. However, you would have to cosume a lot of gluten and if it makes you and your baby that sick it may may not be worth it. This decision will be totally up to you. Another option..., you can get gene testing done to see if you have the celiac gene. This can be done without going back on gluten

[KaitiUSA]

Being gluten free before testing can screw up results. So yes, 1.5 months gluten free would interfere.

It also depends how high the results would have been...say it was in beginning stages and was weakly in the blood...then that amount of time probably would have lowered it to the point it would not be detected.

[tarnalberry]

Yep, the tests can be altered by being gluten-free for as little as a few weeks. (It varies from person to person whether it sticks around for a while or not.) But look at your symptoms! I don't see anything questionable about it! Dietary challenges are valid tests in and of themselves! Don't ignore what your body is telling you!

[aikiducky]

From what I'm reading you already have tested this SEVERAL TIMES! And your husband seems to think it's pretty clear, too. Will a lab result really make it somehow more real?

A gluten challenge is a valid test like other people pointed out. Cutting out gluten from your diet seems to consistenly improve your health and adding it back give you the same symptoms every time again. Do you think it's just a coincidence?

Pauliina

[trimummy of 2]

thank you all for your responses. just the validation itself helps like you wouldn't believe. i think when you are chronically sick with GI symptoms, for some reason, it seems like the rest of the world thinks it's in your HEAD. and that is so frustrating.

i have decided NOT to go back on gluten before my repeat tests in a week. putting myself through that is one thing, but i am not going to put my nursing son through it too. i will go back on gluten for a couple of months in november, after i am done nursing him. i am already worried about him - just noticed his 2 little teeth coming in have black marks on them (celiac disease related demineralization?), and will be making an MD appt for him asap. i am also getting more intensive kidney testing done - anyone here have celiac-related kidney issues?

thank you so much again for the replies.....

[Carriefaith]

i have decided NOT to go back on gluten before my repeat tests in a week. putting myself through that is one thing, but i am not going to put my nursing son through it too. i will go back on gluten for a couple of months in november, after i am done nursing him. i am already worried about him - just noticed his 2 little teeth coming in have black marks on them (celiac disease related demineralization?), and will be making an MD appt for him asap. i am also getting more intensive kidney testing done - anyone here have celiac-related kidney issues?

thank you so much again for the replies.....

It's problably a good idea to stay gluten free if it's affecting you and your baby that much to eat it. Keep us posted

[Eliza13]

I haven't had an "official" diagnosis b/c my doc believed that my symptoms were enough. I had obvious abdominal distention and fat in stool (tested for this), along with a host of other symptoms (see below). I have had symptoms for about 11 years and was always told it was "in my head" or "stress-related"....I was pretty angry when my latest doctor connected the dots b/c of all the past bozos who had missed it.

I guess the best advice I can give is to look at your stool and compare how it looks when you eat/don't eat gluten. If you notice a major difference (as I do when I eat differently), then maybe that is all that you need. This is a tough one b/c most celiac organizations advise that people get an "official" diagnosis, and since I am not a doctor I will not advise you. I guess you have to decide for yourself what the best option is for you. Keep in mind that some of these tests are really invasive (my doc's words).

In my case I had ALOT of symptoms....I also have PCOS (many with PCOS are gluten intolerant as well) and I also had what looked like DH on my elbows, bum and head. I'm not sure what all of your symptoms are....

This is a tough one....One that I have struggled with myself sometimes....(get tested, or to not get tested????). Consult with your doc and hubby and I am sure you will come to the right decision.

Toodles.