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Diagnosed Celiac: Is This Typical/normal?

rockette

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rockette Newbie
rockette
Posted

First I will say thank you for any help and replies! I will try to make this short. I'm 38 female. Was told I had IBS for years. In January, I developed acid reflux. Meds didn't help that much. Had an endoscopy biopsy (out of state as I was gone from home for 2 months) in march and was told I have celiac and "go gluten free and u will feel better!". That was all I was told. In April I went to a Gastro doctor in my home town and I was asked to go on gluten challenge so they could run the blood tests. 3 days of gluten was all I could take. I am to the best of my knowledge gluten free for 3 months. I use my own newly bought cookware, Tupperware etc. I changed all my hair products that contained wheat. I read every label etc. I do not believe I am accidently eating gluten. I am also dairy, corn and oats free.

I have been having these bouts of nausea that come and go with a hungry type feeling/pain that is not relieved by anything. Anti nausea meds help but not enough. I have recently had a CT, MRI, ultrasound to see if anything wrong. Everything is fine. All my bloodwork comes back normal.

So now to my question: have any of you experienced nausea that seems to come and go for a few days at a time while your body is still healing? I know I am only 3 months gluten free and that it can take months to heal and feel better. But geez! This nausea is the worst. That is my main complaint: nausea. No diarrhea or anything else. Also wanted to mention I am seeing a dietician who is knowledgeable in celiac and she said my diet looks good, just need to get more protein.

Thanks in advance for responses!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Some of us have additional intolerances like to soy and dairy. Maybe you could try doing a diet and symptom journal and see if any pattern appears.

saintmaybe Collaborator
saintmaybe
Posted

First I will say thank you for any help and replies! I will try to make this short. I'm 38 female. Was told I had IBS for years. In January, I developed acid reflux. Meds didn't help that much. Had an endoscopy biopsy (out of state as I was gone from home for 2 months) in march and was told I have celiac and "go gluten free and u will feel better!". That was all I was told. In April I went to a Gastro doctor in my home town and I was asked to go on gluten challenge so they could run the blood tests. 3 days of gluten was all I could take. I am to the best of my knowledge gluten free for 3 months. I use my own newly bought cookware, Tupperware etc. I changed all my hair products that contained wheat. I read every label etc. I do not believe I am accidently eating gluten. I am also dairy, corn and oats free.

I have been having these bouts of nausea that come and go with a hungry type feeling/pain that is not relieved by anything. Anti nausea meds help but not enough. I have recently had a CT, MRI, ultrasound to see if anything wrong. Everything is fine. All my bloodwork comes back normal.

So now to my question: have any of you experienced nausea that seems to come and go for a few days at a time while your body is still healing? I know I am only 3 months gluten free and that it can take months to heal and feel better. But geez! This nausea is the worst. That is my main complaint: nausea. No diarrhea or anything else. Also wanted to mention I am seeing a dietician who is knowledgeable in celiac and she said my diet looks good, just need to get more protein.

Thanks in advance for responses!

There are a couple things that come to mind that wouldn't show up on standard assays in a doctor's office.

One is pyroluria, which is I admit, controversial but gaining ground as being accepted in the medical community. In this disorder, one product of hemoglobin biosynthesis that is not excreted in affected individuals binds preferentially to zinc and B6, causing deficiencies of these nutrients. Treatment includes large doses of zinc, B6, and black currant seed oil. A pyroluric person has difficulty making metabolic use of Omega-3 fatty acids, and should also consume more Omega 6 fatty acids and arachidonic acid.

Some top symptoms of pyroluria are morning nausea and a tendency to skip breakfast.

Another possibility might be leptin/insulin dysregulation, which are the hormones that control when you get hungry, when you feel full, and how your body processes the nutrients that you eat. If you are leptin resistant, you might feel hungry at strange times, after you eat, or at odd hours of the night. The fix to this is to go grain/starch light or free, and eat protein, fibrous greens, fruit, nuts, and seeds. The goal is to switch from a glucose metabolizing diet to a ketone diet, which incidentally leaves you feeling less a slave to food, and might help you lose weight (if you need to).

Note that the above two problems are not mutually exclusive (they can both be true), and dovetail nicely with your dietician's recommendation of getting more protein.

mommyof4 Apprentice
mommyof4
Posted

I may not be the best one to reply because I am 8 months since diagnosis & I still have some issues we are "figuring out".

However, nausea was a big thing for me those first months...I was on Zofran for the nausea...which helped some, but I still struggled with it. I know that feeling of being desperate to try anything to help...soooo off to a chiropractor I went. He's not the "bone crackin" kind of chiropractor, but he works more with muscles. I only had to go a few times & he worked muscles in my neck...I also had many procedures done during the diasnosis stage...4 endoscopies in total, CT scans, MRI's...the chiropractor suggested that sometimes the way the neck is manipulated can cause nausea. For me, as soon as I went & had my neck worked with a few times, I was able to stop taking the Zofran. I have no idea if it was the chiropractor that helped or just time that helped.

I've read that nausea can be an effect of Celiac...I still will have some nausea, but not like it was at the beginning. You are still only a couple months post-diagnosis. I also agree with the previous post about watching for other food intolerances, although it sounds like you are pretty careful.

Hang in there...I know how much of a life change all of this is! I've told my husband many times that I don't mind the diet change...I just want to feel 100% "back to normal".

rockette Newbie
rockette
Posted
  • Author

Thank you. I will look into the things that were suggested. I do have to say that my nausea comes and goes but when it is here it is here for a few days straight at the least. I am now on day 6 with no relief. Go to bed with it and wake up with it. This is my longest bout of it so far. I also am taking zofran and it does help take the edge off but doesnt make me completely functional. I keep telling myself how I know that I new to this and it takes time! But it is just hard when I feel so sick.

Also, I did stop soy for a few weeks and didnt notice an improvement. Maybe I need to go off of it for longer. I find the whole food intollerances and figuring out which ones are triggers to be hard to do.

I have not ever seen a chiropractor before but who knows! I would do whatever it takes to make me feel even close to normal again. I think I will see a naturopath next.

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