I'm 98% Convinced...should I Bother With Testing?

[rarmama]

I had my third baby in September, and have not felt right since. Looking back, I can see symptoms that go back much further than that, but I think this birth really may have triggered Celiac disease in me. I've read that pregnancy and childbirth can kickstart it, and in addition, it was a c-section (my third c-section, and a VBA2C attempt which resulted in a uterine rupture and massive bladder damage.) So all of that together sounds like a pretty big bodily stressor for me. I have also been very stressed the past few years, and that is when things have started to go downhill. I first started going gluten-free a couple of weeks ago, because I am breastfeeding and we keep getting thrush, and no matter what I do, it keeps coming back. I had never had it with either of my other children, but this time in less than 4 months, we've had it 3 times. So I have eliminated most sugar, most dairy (for now,) and gluten. I have already noticed a huge increase in energy, less bloating, and just a generally clearer head. That got me thinking about celiac disease, and every weird symptom I've had seems to be associated with it. I'm pretty convinced.

I've dealt with depression and anxiety most of my life, but they have gotten much worse during my last pregnancy, and anxiety is even worse since she's been born. I'm also always very fatigued, no matter how much sleep I get, though I also deal with insomnia. Brain fog has gotten way worse. Restless legs, ever since I was a kid. Shaky hands. Since my last pregnancy, tingling in hands and feet, and almost hypersensitive to touch on my fingertips. I used to have headaches all the time (less frequently now,) and my knees were always sore as a kid. I'm always anemic, especially when I'm pregnant. A few years ago, I started to have abdominal pain and bloating where I would just all of a sudden blow up like a balloon and look 5 months pregnant. I thought it was something reproductive, but the doctors could never figure out what the problem was. I have had that pain again ever since I had my third baby (making me feel like I had never really healed from the c-section.) My hair has been getting thinner and thinner for years, and is very brittle, as are my nails. My skin is dry and gets itchy (especially my scalp,) though I don't have a rash. Since my teens, I get a rosacea like rash when I'm warm, nervous, or consume alcohol. When I drink beer, even a little, I get diarrhea, terrible gas, and bloating and feel hung over even though I've consumed very little. I have had recurrent BV and yeast infections during and since my third pregnancy, and just always feel "icky" in that area (TMI but my boyfriend even told me I don't smell the best down there, and it's affected my sex life a lot.) I also have pain during intercourse, and sometimes it will cause me to bleed. My period returned very quickly after my third baby even though I'm breastfeeding, but it's been sporadic and irregular--sometimes it'll last for almost 2 weeks and then I go a month and a half without. (I always used to be regular.) My teeth have always been yellowish, and my gums have always bled. My nose is always stuffy. I have night sweats all the time, and always feel hot. I have terrible gas, all the time. I have diarrhea fairly frequently. I feel run down and achy and my abdomen feels achy (kind of like menstrual cramping,) all the time. I still look 6 months pregnant since I had my baby, and no matter how much I exercise, it won't go away. Even have read that lower extremity deep vein thrombosis can be associated with celiac, and I had a DVT in my leg when I was pregnant with my first baby (they never could figure out what caused it. I figured celiac was a long shot, but searched it last night, and sure enough it is often associated with DVT. ) With my third baby, I had a subchorionic hemorrhage (mini placental abruption, terrible bleeding.) I had a miscarriage in between my second and third baby. And now this persistent thrush. I'm sure there's even more, but everything I search in Google with "celiac" comes up as a possible symptom. I'm blown away, that all this time that might have been the problem. And I'm already feeling a slight improvement in some areas since I gave up gluten.

I would ask for the blood testing, but would it be accurate if I've been gluten-free for almost 2 weeks? Is it still recent enough that I could get the tests done without having to go back to eating gluten? I should also have my kids tested. My first daughter was tested for Celiac when she was very young, as she used to scream and vomit constantly, couldn't eat solid food until she was almost 3, and was and is still, very small for her age. She also has Asperger's. But when she was tested, she was younger than 2, so the test may not have been accurate. And I have a suspicion my mom could have it as well. I would forgo testing, but I feel like my family won't take this seriously without an official diagnosis. Is two weeks still recent enough for antibodies to show up?

[eatmeat4good]

If you want to be tested, quickly call the Dr and get it scheduled for a full Celiac panel. You might get away with it. It might still be negative but at least you tried. I considered testing for about 24 hours...then decided to heck with it...I gotta feel better NOW. I don't regret my decision. Later was diagnosed due to the healing in my DH on being gluten free. But for you...the question is whether you would stick to being gluten free without testing. Or would you not believe that you are Celiac? You can test the kids too and their tests can be negative but they could still be gluten intolerant.

I'd probably try to get blood test ASAP. Then test the kids. then decide if you want to do elimination of gluten followed by challenge and observe how you (and the kids) do. Who in your family are you afraid won't believe you? If it is your husband and he buys the food then you have an issue. If it is extended family, well, they take a little time to adjust and they may never believe you, but if they don't prepare your food and you know this is right for you...so what?

If you are feeling better and you have all that responsibility with the kids...I'd be tempted to just stay gluten free. But you do have to wonder if your kids have it too. I took my son gluten free with me. Then when he ate pizza with his friends he got sick as a dog. So he was diagnosed on a challenge only. It's not in his medical chart. But we don't worry about that. He is firmly committed to being gluten free. Some people don't care if they have medical confirmation or not. You have to decide if you need that for any reason or not.

Are you going to take the whole family gluten free? Or feed the kids gluten which might make you sick if you are Celiac.

Testing everyone now is a great idea. If you can't do that or don't need medical confirmation, you can just stay gluten free and see how the kids do when they eat gluten out or at other's homes. That would give you some information. the risky thing is if they are Celiac with silent symptoms. My sister has 6 kids...and a story similar to yours. Finally they got tested. She was negative as she had eliminated gluten for two weeks (for a bunch of symptoms like yours). 2 kids positive and they had no symptoms at all so it was a shock.

Glad you found out about Celiac and that you feel better off of gluten. That is the main thing, whether you test positive or not and whether you test at all or not.

[Skylark]

Yes, you could be celiac. Since you've only been gluten-free two weeks if I were you I'd start eating it again and get the test scheduled ASAP. If you stay off gluten and the test comes back negative you will always wonder.

Look up candida treatment as well. A lot of your symptoms are typical of candida overgrowth. With the recurrent thrush and other yeast infections, it's almost certain there is candida overgwoth in your bowel as well. Talk to your doctor about taking diflucan or Nystatin and be prepared to feel worse for a bit from die-off symptoms. A good probiotic is a must (I'm taking Primal Defense Ultra and I've also used Threelac), cultivate a fondness for unpasteurized or homemade yogurt and sauerkraut - look for Bubbie's, eat lots of virgin coconut oil, and a starch and sugar-free diet should start to set things right. Yeast in your crotch is also treatable. Open Original Shared Link

Gluten-free will likely help, but it won't fix the candida issues by itself.

[tarnalberry]

After two weeks gluten free, my blood tests were inconclusive, would they ever have been positive? I don't know. But I know I feel better gluten free. It's a hard call, I'd probably try for the test, but stay gluten-free myself.

[rarmama]

I definitely have an issue with candida, that's what got me started down this road to begin with. I was on nystatin for awhile but it wasn't helping. Now i take grapefruit seed extract and garlic every day and have seem some improvement (no return of the thrush yet.) I also take a critical care probiotic twice daily, and made coconut yogurt with it as a starter. I wanted to do a candida cleanse but apparently they're a no-no while breastfeeding so I saw that some breastfeeders had had luck with a clean diet--mainly veggies and brown rice. No sugar, dairy, or gluten. So that's what made me decide to try eliminating gluten, and was really surprised to see other symptoms improving. Then we all know what happens when you start searching medical stuff on Google...lol

So I have an appointment on Tuesday and am going to ask for the test, along with maybe a thyroid panel (I have always felt like my thyroid is wonky, but tests have always shown that it's just on the edge of normal.) are there any other things I should maybe ask him to test me for?

Haven't decided yet if I'll go back on gluten for the test. The first few days I wasn't as careful as I should have been, was mostly minimizing rather than truly eliminating, and didn't know a lot of things I was still consuming could contain gluten (ie. my prenatal multivitamin that I'd still been taking,) so I might still be okay for testing. I just know I feel better off it, so I really don't want to eat it and feel crappy again and have to go back to square one with feeling better. But I do kind of want a diagnosis. So that's still kind of up in the air, but at least I made the appointment.

[Skylark]

LOL! Medical stuff on Google is always fun. I can definitely see the challenge with the candida cleanse breastfeeding, but I bet it's the source of some of your symptoms. Is it safe to eat virgin coconut oil? It's really good stuff for yeast. Super-helpful.

Funny that you landed on gluten through the candida instead of the other way around. A lot of us go gluten-free and still don't feel better so we start searching for other stuff.

Could you share your recipe for coconut yogurt? I'm dairy-free right now and it sounds really good!

[rarmama]

  On 1/12/2012 at 10:32 PM, Skylark said:

LOL! Medical stuff on Google is always fun. I can definitely see the challenge with the candida cleanse breastfeeding, but I bet it's the source of some of your symptoms. Is it safe to eat virgin coconut oil? It's really good stuff for yeast. Super-helpful.

Funny that you landed on gluten through the candida instead of the other way around. A lot of us go gluten-free and still don't feel better so we start searching for other stuff.

Could you share your recipe for coconut yogurt? I'm dairy-free right now and it sounds really good!

Just edited my last post--wow, when I type on my phone, I make a lot of mistakes.

This is the recipe I used for the coconut yogurt: Open Original Shared Link

[Skylark]

Thank you!

[Jestgar]

  On 1/13/2012 at 1:35 AM, rarmama said:

Just edited my last post--wow, when I type on my phone, I make a lot of mistakes.

This is the recipe I used for the coconut yogurt: Open Original Shared Link

Yummy!

[rarmama]

It's sooooooo good. I like with some honey and vanilla extract mixed in (though i'm battling yeast, so no more honey

[rarmama]

I see my doctor on Tuesday...and I know I should be eating gluten if I want to get tested, but OMG I FEEL SO MUCH BETTER than I have in years, so i've been totally gluten free. Until tonight. It's my birthday, and my wonderful boyfriend brought home an oreo ice cream cake from Dairy Queen, and how could I say no to that? (one reason I maybe need an official diagnosis...he obviously isn't taking it seriously, and I gave myself permission to cheat.) And...now I have terrible gas (one of my most persistent symptoms since I had my daughter, had almost gone away until now,) and panicky anxiety starting up, feeling sluggish and bloated, big D....can't believe what a difference I see already. And I'd gotten so used to feeling this way that I barely noticed it. I want a diagnosis, but to purposely go back to gluten when it does this to me? That'll be hard to do...

[eatmeat4good]

Yes ma'am...that will be hard to do.

There are a lot of us who cannot get tested for that reason.

Personally, I have no interest at all in testing.

I feel so much better without gluten that I believe it is Satan himself.

My Dr. eventually diagnosed me based on all the things that healed when I went gluten free including the rash he had treated for fungus, bacteria and viral infections. It was DH.

Anyway here's to feeling healthy for the rest of your life!

Cool!

[rarmama]

Ugh, well, I saw my doc today, and before he does any tests for celiac, he wants to AGAIN rule out my reproductive system. Ultrasound at beginning of February, and after that I might get my tests. He assures me that no matter what we will figure this out. I suppose it's not a bad ideas to look at my reproductive system anyways, since I had a uterine rupture 4 months ago. Could explain the pain, but doesn't really explain the bloating, big d, and gas, and why it's worse after eating...but we'll get there.

[Aly1]

Ugh that is so frustrating, why not order a simple celiac panel just to cover all the bases? Are you just going to go gluten-free now and give up on the testing? I personally tested negative despite a big correlation between gluten and my symptoms. I've decided to pursue genetic testing so I can at least have that part of the puzzle clear...but for me a DX is important. I've spend so many years going from doc to doc and being doubted by both them and a lot of family members, so I really feel a need to know all that I can. I guess that's what you'll have to decide for you now - go back on gluten until the testing and feel lousy till then, or just let that go and feel better now...

[ciamarie]

If you have a choice, I'd suggest you find a new doctor.