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Still Sick, Any Suggestions?

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fun-size Newbie
fun-size
Posted

I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

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Lisa Mentor
Lisa
Posted
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

Most of the answers to your questions are YES. Your are healing, you might be getting some cross contamination's somewhere and dairy could be bothering you.

I may take several weeks to several months for you to heal. Old toasters, scratched pots and pans, cutting boards, can be objects for cross contamination. Have you checked your vitamins, meds, shampoo, lotion for gluten.

Be diligent and it takes time.

fun-size Newbie
fun-size
Posted
  • Author
Most of the answers to your questions are YES. Your are healing, you might be getting some cross contamination's somewhere and dairy could be bothering you.

I may take several weeks to several months for you to heal. Old toasters, scratched pots and pans, cutting boards, can be objects for cross contamination. Have you checked your vitamins, meds, shampoo, lotion for gluten.

Be diligent and it takes time.

I didn't realize that shampoo and lotion could even have gluten! Thanks for the suggestion I'll go check right now.

I guess I was just hoping that once I had a diagnosis I would be magically cured with my new diet. I'm a 23 year old 4th grade teacher so with all my activities and a busy teacher schedule I don't have the time to run to the bathroom whenever my stomach decided to be sick. I guess I'm just having a melt down day, I need to remember my patience.

Thanks so much for listening and your support. I just needed someone who understands.

Lisa Mentor
Lisa
Posted

As a 4th grade teacher, you should be aware of some school supplies have gluten. Play Doh is not gluten free. Google on this site a list of "gluten free school supplies", you should come up with a listing.

And another thing to be careful is with the children's lunches. Watch out for their crumbs. Everything that gets in or near your mouth must be checked out from shampoo to soy sauce, natural flavors to spices in labeling. The key to your success if learning to read labels.

Shampoo, although not everyone is as concerned, can get into your mouth while shampooing. Dove and Suave are gluten free.

The diet is the "magic cure", but it does take time and the learning curve is steep. The best suggestion that I can give you is to read, read and read from this site. If you have questions, always feel free to ask...and no dumb questions here.

Welcome to the club. ;)

mamabear Explorer
mamabear
Posted

Great reply from Momma Goose. My suggestion for your back up plan is to ask your physician for an antispasmodic med like Levsin,Symax (trade name drugs are more expensive, but you are better able to vet out a gluten free status from the manufacturer). They will not stop the bowel motility, but will slow it down and decrease the cramping. The need to take it will taper off as you are successful with the diet.

And if you take any medications, check with the manufacturers for them being gluten free.

MDRB Explorer
MDRB
Posted
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

Hi,

I am having a similar problem. I have been gluten-free for a couple of months. Most of my stomach symptoms have gone but I still feel a lot of fatigue. I also get a lot of stomach symptoms from dairy. I find that hard cheeses are ok but anything with a lot of lactose like milk, sour cream or soft cheeses make me sick.

I would suggest you keep a food/symptoms diary to help you pin point what is causing the stomach upsets.

fun-size Newbie
fun-size
Posted
  • Author

Thanks for all the fabulous suggestions. It makes me feel so much better talking to people who have been through this. Sometimes I feel so alone with a lot of sympathy from friends and family but they can't answer any questions because they're no sick. Hopefully with more patience, time, label reading and food journaling I will make it through. You are all the best! I wish I could send you all a bouquets of flowers for your time and suggestions.

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Lombardi25 Apprentice
Lombardi25
Posted
I was diagnosed a month ago and have been eating gluten-free since. At first it seemed like my stomach symptoms cleared up but now I will have several days a week where I'm still sick. Is this just because I'm still healing, I'm getting gluten contamination some how, or are there other foods that don't sit well? I just want to know that I can make it through a day without having a back-up plan for if I get sick. Especially if there are other foods that don't sit well I'd like to avoid them. Do I have a wrong diagnosis or should I be tested for other stomach problems or food allergies? I would appreciate any help or suggestions.

Thanks!

I know how you feel also. I was just diagnosed about three weeks ago with Celiacs. I am 28 and have had stomach problems as far back as I remember. I finally went to see a gastrologist last month and within three weeks I had a lactose test and an endoscopy/colonoscopy scheduled and done. The lactose test was negative but during the endoscopy they took a biopsy and saw that I had no villi and hence diagnosed me with Celiacs.

I'm a very finicky eater and all I've ate my whole life was breads and pastas and pizza and burgers/hotdogs with buns etc. pretty much everything you can't eat with Celiacs so it has been a huge change for me and I have been trying new things finally and staying gluten free (almost a month now).

But with that said I have had at least one really bad stomach ache for a day or two once a week since starting the gluten free diet and I have been feeling so run down and fatigued to the point where I have worked from home a couple days because I spend all day at work just trying to get by.

I am hoping that all of this will start improving over time as my villi heal/grow back and all that but it is really depressing because my doctor didn't really give me a whole lot of info after diagnosing me and I couldn't get in with a nutritionist until the end of the month (May). So I have pretty much spent half of my time every day trolling this forum and reading about Celiacs everywhere I can myself.

It has been alot of trial and error but I feel like I have done a pretty good job. I've bought my own pots/pans, strainer etc. and actually tried the Outback with their gluten free menu last week for the first time but like I said I completley know where you are coming from becuase still getting sick really bad once or twice a week is not what I had envisioned by this point of being gluten free. I keep questioning myself of when I may have gotten glutened but in the end I am pretty certain that I'm just not nearly ready to digest alot of the foods I am probably eating.

I also have some of the anti-spasmatic medicine that my doctor prescribed me before I was diagnosed but that has not seemed to do much for me when I get really sick. I have the regular kind once a day kind and the bilingual kind for spur of the moment stomach aches.

So anyways, I just wanted to respond to you, tell my story and say hi to the forum, I really have found this to be my new safe haven and source of information, it is so great to read everyone's stories and I'm happy to finally share mine. :-) Hope you start feeling better too fun_size, I hope that in 3-6 months from now I can look back on what my life used to be like and just be so happy about where I am.

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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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