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Need A Little Guidance

CecilyF

By CecilyF
in Coping with Celiac Disease

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CecilyF Rookie
CecilyF
Posted

I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

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StacyA Enthusiast
StacyA
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Hi Cecily. Over a hundred people have viewed your post, but no one has replied. I think it may be because you're asking such a global question, and because you're in the 'products' section. I'm new to gluten-free, so I don't know all that much, but I wanted you to have someone reply. 6 days is very early into gluten-free, and if you've been sick a whole year it's going to take time to heal - therefore I bet you won't exactly be able to tell yet if it's just part of the ups and downs of healing or if you've been exposed to gluten. The 'coping with' and 'post diagnosis' forums have a lot of threads that echo some of your frustrations and might help you figure out what's going on or at least not feel crazy or alone. From what I can gather, everyone is different in how quickly they respond to gluten, and it will take time for you to figure out how your body responds. Check out those sections. - Stacy

Wolicki Enthusiast
Wolicki
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Did you have dairy with that meal? It's tough to do dairy for most of us until we are healed.

jrc121 Newbie
jrc121
Posted

Hmmm. It's quite possible. Since you're new to the game you need to prepare yourself to expect being glutened a few times, unless you get really lucky and avoid all cross contamination possibilities and hidden glutens. I would probably avoid what you ate at least for a while just to be safe, unless you're 100% sure of no gluten (say if you ate fruit or something). Search the brand name of what you ate online and/or call the company about gluten content. Could also be that you can't handle soy or corn.

New-To-This Rookie
New-To-This
Posted

From one newbee to another. My husband got so sick he ended up in the hospital. Have you gotten a new, toaster for your gluten free breads? A new cutting board? A new frying pan? Etc... You can get glutened at home by not replacing the MANY items that you use to prepare your meals. Anything wooden or scratched needs to be replaced. Yes it can and will make you sick if you don't. You could be contaiminating yourself unknowingly. It took my dear husband ending up in the hospital for us to realize, yes, even our cooking untensils can make him sick if they where used with wheat products in the past! I just had the scariest week of my life. My husband had such sever intestinal cramps Saturday the 12th I had to take him to thw hospital and he was in so much pain, I thought I was going to lose him. It took 3 shots of morphine to get the pain to where he could tolerate it. I don't mean to scare you, I just want to make sure you realize how serious this can be.

Also here are a few web sites you might find handy:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There are tons more. I have used and saved a few of these in my favorites for my own personal use. I have even foud lists ingredients to watch for on your food labels, and before printing these lists I would have bought products that would have made my husband sick all over again. An example MSG has at least 20 differnet names and if you didn't know that you could eat something and get sick and have no idea why. And Gluten bi products and products have names you would not realize have gluten in them. Research is you best friend and your guide to preventing getting glutened again.

The people on this web site are absolutely wonderful, without them I don't know what I would have done. I just hope this information is as helpful to you as theirs has been to me! :D

New-To-This Rookie
New-To-This
Posted

Oh and I forgot, if you see a name of a book listed anywhere see if you can check it out of your local library. I have checked out at least a dozen books so far and gotten tons of information. Do realize that some of this information is old but still worth the read. I have found a few I want to buy for my personal library at home after reading several I didn't find very interesting. I found a wonderful cookbook too.

I wish you the best of luck!

CecilyF Rookie
CecilyF
Posted
  • Author

Thank you all so much! Stomach cramps subsided after that one bad day. I feel like a new woman after being gluten free!!

I appreciate all the info. What a life-changing experience this has been.

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

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
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