In Need Of Help But Cannot Go Through Testing At This Time

[mommyof6inneedofhelp]

Hi all,

Wow am I thankful for this site. I have been searching it for awhile for answers but this is my first post. I am desperate for answers...I am sick and have no idea what is going on with my body.

 

My symptoms started about a year ago but seem to be getting worse quickly. When it first started, I had the classic celiac symptoms (sorry TMI...floating loose stools, steatorrhea, malabsorption syndrome, joint pain, fatigue, and rash in between my fingers.) After a miscarriage and the symptoms becoming unbearable, I knew something was VERY wrong. So I began to research and came across celiac. I began eliminating gluten from my diet and felt amazing. Symptoms went away after a few weeks...I had energy, stools became normal, etc. After 2 months of going gluten free, I became pregnant. Because of this, the doctor has advised me not to go through testing as I would have to expose myself to a lot of gluten for testing to be accurate. This could hurt the baby.

 

Fast forward a few months...I have done well gluten free, but have also been "glutened" accidently. When it occurs the symptoms are HORRIBLE. Chills, almost like the flu. I was glutened a week ago through accidental exposure again, but this time it is taking my body so much longer to get back to health!

 

A few questions:

1) I cannot take dairy in any form now...it is extremely painful. I have tried lactaid, but that causes just the same amount of pain. Is this common with celiac?

 

2) I have seen a naturopath who highly recommends enzymes and ensures that they are a cure for getting me back to health...even goes are far to say I do not have celiac, just an "imbalance." Have any of you found enzymes to "cure" your symptoms? And if so, what do you take and where do you buy? I am not sure if I should continue pouring lots of $$ into this woman!

 

3) Will I ever feel good again? I am miserable....just miserable. The smallest amount of gluten hurts me for at least a week...then it's back to square one. Why did I feel so wonderful when I first started eliminating, but not now?

 

4)I have looked into the SAD diet to heal my gut but with 4 children and being pregnant, I am a bit concerned that I will starve...ha! Plus it's hard to cook like that with a family! Has anyone tried with success?

 

Any advice would be so greatly appreciated. I feel lost.

Thank you so much!!!

[bartfull]

Hi and welcome to the forum.

 

It sure sounds to me like you have celiac. It's too bad you couldn't have been tested before you got pregnant but I agree, you shouldn't try a gluten challenge right now.

 

To answer your questions, it is very common for folks with celiac to have problems with dairy, at least at first. The villi, the part that digests our food, is damaged, and it is also the part that releases an enzyme that breaks down dairy. It isn't working right now. A lot of us have to give up dairy for about six months or so and then as healing takes place, we get it back. I'm concerned though that being pregnant, you need dairy. I think you should be taking heavy calcium and vitamin D supplements to make up for it because when we are pregnant the babies kind of leach the calcium out of our bodies. Now, I am NOT a doctor, so please, consult with your doctor about this.

 

Digestive enzymes (and probiotics too) have helped many of us feel better. They don't cure celiac, but they do make us feel better. Once again, because you are expecting, consult your doctor before taking anything.

 

You experienced something very common when you went off gluten. I call it the "honeymoon". I went through it myself. After about two or three weeks I felt better than I ever had, and then I started feeling crappy again. For some folks it's because the celiac symptoms masked our intolerances to other things. Dairy, soy, and corn are all common things some of us are intolerant to. Not everyone has further intolerances, and a lot of us get thoses foods back once they heal.

 

What COULD be happening to you is, you just feel crummy because you haven't healed yet, you could have further intolerances, of you could still be getting glutened. There is a thread in the coping section here called Newbie 101. It'll teach you all sorts of things about celiac, the diet, and how to avoid cross-contamination. For example, if your husband eats gluten or drinks beer and then kisses you, you just got glutened. If you use the same butter, peanut butter, mayo, etc. that gluten eaters dip their knives into, you have just been cross-contaminated. You need a separate toaster. You need your own cutting boards, wooden spoons, strainers, colanders, etc. You can't use cast iron or scratched teflon pans if they once held gluten.

 

And you need to check your meds and supplements. Some may contain gluten. Most importantly, you need to wash your hands every single time before you put anything in your mouth. And read every single label every single time you buy something. It sounds overwhelming and to be honest, it is at first. BUT!!! I PROMISE it will get easier - to the point that you hardly ever think about it. It becomes second nature.

 

Oh yeah, and celiac runs in families. It is a good idea to get all of your kids tested too.

 

So read the Newbie thread, then come back and ask lots of questions. And make sure to check with your doctor about any changes to your diet while you are pregnant.

[mommyof6inneedofhelp]

Thank you, thank you, thank you for your help and information! I am sure I am being cross contaminated...I guess I just never took it that seriously. Wow, my eyes are being opened. I will check out the Newbie 101 forum. Thanks again so very much.

[nvsmom]

Ditto everything Bartfull said. If your children eat gluten, it is a good idea to retest every two years since the disease can hit at any time.

A few questions:

1) I cannot take dairy in any form now...it is extremely painful. I have tried lactaid, but that causes just the same amount of pain. Is this common with celiac?

About 50% of celiacs are lactose intolerant at diagnosis.  Many regain the ability to tolerate dairy, or at least some dairy, after 6-12 months gluten-free.  I was happy to reintroduce icecream after a year or two.  

 

2) I have seen a naturopath who highly recommends enzymes and ensures that they are a cure for getting me back to health...even goes are far to say I do not have celiac, just an "imbalance." Have any of you found enzymes to "cure" your symptoms? And if so, what do you take and where do you buy? I am not sure if I should continue pouring lots of $$ into this woman!

I took an enzyme for a while but I can't honestly say that I noticed it helping.  Others find probiotics help get things back on track a bit faster.

 

3) Will I ever feel good again? I am miserable....just miserable. The smallest amount of gluten hurts me for at least a week...then it's back to square one. Why did I feel so wonderful when I first started eliminating, but not now?

I too felt pretty good in my obvious symptoms like bloating, stomach pain and headaches, in the first 2 months.  I then back slid for a few months and felt worse even though I KNOW I was only glutened once. It can take months to years for our body to stop making autoantibodies (it took me over a year) so until then, you can not heal completely.  This disease requires a LOT of patience.

 

4)I have looked into the SAD diet to heal my gut but with 4 children and being pregnant, I am a bit concerned that I will starve...ha! Plus it's hard to cook like that with a family! Has anyone tried with success?

I'm afraid that I don't know the SAD diet.  I thought it was the Standard American Diet.  

Most celiacs find they heal better, and feel better, on a diet that avoids processed foods and limits grains.  Gluten free substitute foods like bread, noodles, crackers, and muffins are generally less healthy than the regular products.  Celiacs generally do better with naturally gluten-free foods like meat, eggs, veggies, fruit, seafood, rice, quinoa, and potatoes.

 

 And welcome to the board.