Frustrated and needing advice

[jenesnow]

Hi I am new here. Some history. I had a baby in Feb. 2015. She was born with a mild version of Spina Bifida known as tethered cord syndrome. She had to have surgery at 3 months old. I nursed her until she was one. Once I stopped nursing, I drastically started to lose weight. I have had stomach issues on and off and it seemed like nothing was going to make it better. I have been in and out of the drs offices, screened for parasites. When I was screened, they found a "large amount of yeast" in my poop sample (sorry for TMI!) They sent me on my way and my dr said that there was nothing to do and to meditate and eat healthy and she hoped I feel better soon. After a year of this and losing 40+ lbs that I didnt need to lose, I was pissed. I started doing some research on my own and started the GAPS diet thinking that maybe it was excess candida or something.  Over the weekend, without thinking I popped a piece of my daughter's cereal in my mouth and then promptly spit it out. Within two hours I had severe diarrhea, so I discussed with my uncle who is a doctor. He told me that my other uncle has celiacs disease and that I should be tested. So I have an appt on July 20th with the GI dr. I emailed and told  him that I had been following and elimination diet for 4 weeks and have not been consuming gluten. He advised that I would have to eat the equivalent of 4 slices of bread a week for 6 weeks in order for the test to be effective. So yesterday I had a slice of pizza. I spent the night in the bathroom, my stomach is severely cramping, I have a massive headache and I just want to cry. I feel like I am poisoning myself, but I need an answer. Is there anything that I can do to abate the drastic symptoms while I do this next 6 weeks of reintroducing gluten into my diet? I feel so hopeless and like those 4 weeks of feeling better and eating well were in vain and if anything set me back.  So i guess my question is, would coming off of a gluten free diet as someone with non celiac disease, would I still have this kind of reaction? Or does this definitively mean i have a gluten problem? 

[tessa25]

I can't answer your specific questions, but I thought it was one slice of bread per day for 12 weeks. A slice of bread would be way less irritating to damaged insides than pizza. Might hurt less.

 

[Feeneyja]

Yes, it is 1 slice of bread per day for 12 weeks per the University of Chicago celiac center.  But other celiac centers call for 3 slices of bread.  Unfortunately, it is really unknown just how much you need to consume and for how long to guarantee the damage will show.  Attached (if I got it to work correctly) is the steps towards diagnosis as currently recommended by the American College of Gastroenterology.  My doctor didn't follow those steps at all. I only made it through a 1 month gluten challenge.  My biopsy and blood work were negative. But it was only 1 month and the lab wouldn't run the full panel so I'm left still wondering if it just wasn't long enough to catch it.  I'm still recovering from the gluten challenge (2 weeks back to gluten free, gluten free for three years prior to this because of my daughter's gluten intolerance which also was a negative celiac test after a gluten challenge).   So, unfortunately, tests may not be accurate when gluten free and you can still be left wondering. 

Incidentally, I went through a similar situation where I lots 30 lbs after weening my daughter. The weight loss was not accompanied by calorie restriction. I never had a solid bowel movement and began loosing my hair, fractured my foot, was anemic. But then I got pregnant again and everything went away (not before I lost 5 more pounds at the beginning of the pregnancy).  We went gluten free for my 8 year old daughter right after the baby was born, so never gave it another thought until I noticed I would get sick when I ate gluten containing foods out or at other people's homes. 

I'm sorry you have to go through this.  It is definitely a terrible process.  Crackers, pretzels or bread were easier for me to stomach than pasta or pizza. But instead of loose bowel movements, I was surprised by instant, terrible constipation. So it may be different for you. I have also heard people suggest to take your gluten before bed so hopefully you can sleep and not notice the symptoms. I don't know how well that will work with diarrhea. In any case, stay hydrated and rest. 

[Feeneyja]

Oh, and as to your other question, you have this reaction because you have a gluten problem.  

My other kids and husband can be gluten free with us for months and eat gluten at someone else's home with no problem. Not me or my daughter who also is gluten intolerant.  Is it autoimmune in nature (celiac disease) or is it a sensitivity (which is also immune in nature, but not your immune system attacking your own tissue)?  There is no way to know that one for sure unless you go through testing. And even then a negative test may mean you don't have celiac disease YET.  

It is suspicious that you have an uncle with celiac disease. 

[jenesnow]

4 minutes ago, Feeneyja said:

Oh, and as to your other question, you have this reaction because you have a gluten problem.  

My other kids and husband can be gluten free with us for months and eat gluten at someone else's home with no problem. Not me or my daughter who also is gluten intolerant.  Is it autoimmune in nature (celiac disease) or is it a sensitivity (which is also immune in nature, but not your immune system attacking your own tissue)?  There is no way to know that one for sure unless you go through testing. And even then a negative test may mean you don't have celiac disease YET.  

It is suspicious that you have an uncle with celiac disease. 

Thank you Feeneyja. I will try to just stick with crackers or toast for a while. Hopefully that will be easier. Thank you for answering about your husband and kids not having issues at all. That is helpful to know. I didnt want to freak out and say for sure this is it if there was a chance that it is just my body reacting to something it hadn't had for a while. I am hopeful that since it was only a 4 week diet I was on that it did not "heal" me too much to show a positive in 6 weeks or whenever I end up doing the test.  I was feeling pretty darn good though. :|

 

[jenesnow]

58 minutes ago, tessa25 said:

I can't answer your specific questions, but I thought it was one slice of bread per day for 12 weeks. A slice of bread would be way less irritating to damaged insides than pizza. Might hurt less.

 

I dont see that my response posted! It was just a simple pizza. Veggies, olive oil on the crust and I had already introduced all the  other ingredients into my diet already without a reaction. Definitely willing to try just bread or something else, but honestly figured, if it is going to hurt no matter what, I may as well enjoy the stuff I am going to miss when I have to go full gluten-free! 

[tessa25]

10 minutes ago, jenesnow said:

I dont see that my response posted! It was just a simple pizza. Veggies, olive oil on the crust and I had already introduced all the  other ingredients into my diet already without a reaction. Definitely willing to try just bread or something else, but honestly figured, if it is going to hurt no matter what, I may as well enjoy the stuff I am going to miss when I have to go full gluten-free! 

 

I wasn't talking about a reaction, I was talking about tomato sauce and spices being an irritant to damaged insides. Everybody is different though. Might not bother you one bit.