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Just Not Getting Much Better...

Bravie

By Bravie
in Coping with Celiac Disease

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Bravie Apprentice
Bravie
Posted

Hi everyone. I am new to this forum. I am 20 years old and currently living with Celiac disease.

I have been going gluten free at the doctor's orders since around may. About 3 months ago. I started to feel better and was pretty much symptom free the entire month of June. Then one day, I accidently ate something with gluten in it, around July 1st, and I haven't been the same since. My stomach has been feeling very bubbly, it's been hurting after I eat, gas, occasional diarrhea, I'm gaining alot of weight in the stomach area, and I feel very foggy headed. All from one slip up. I mean, my symptoms aren't as bad as they were before going gluten-free, but it is still very bothersome...My mom suggested that I lay off dairy for a bit, or eat less of it for a while. I absolutely LOVE dairy. You just can't tell me that I can't eat dairy ever again! :( I am willing to improvise and eat less of it, but I can't just stop eatting it all together ><

Also since then, I got this white spot in my mouth and my lips peel like every 3 days. I've always had problems with my lips but not to this severity. I've been eatting gluten free since I was contaminated, no slip ups, and i'm still not getting any better. And i'm scared to death that maybe I might have some other problems going on in my body too. I can't afford to go to a doctor right now. My insurance ran up.

This is very difficult. All I hear from people is that things will get better. They were getting better until I slipped up that one time...But why is it taking so long to recover?

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Eriella Explorer
Eriella
Posted

Gluten affects me for a long time-- up to 3 weeks!

Make sure that there is no hidden gluten in your diet-- shampoo, lipstick, utensils..., then I would suggest going off of dairy as well. I have dairy issues that didn't show up until I was gluten-free for about 2 1/2 months. Because lactase (the enzyme that digests milk) is produced by the villi in the small intestine, the same villi that celiacs destroys, going milk free is normally best :angry: . Or at least very low dairy.

If it doesn't get better in a week, I'd suggest getting more blood work and seeing if there is another problem.

JNBunnie1 Community Regular
JNBunnie1
Posted

Hi Bravie, relax, I don't think there's anything 'else' wrong with you. All those exact same things happened to me. In fact, I recently got glutened, and after I had recovered, I started getting the worst diarrhea ever. Turns out I'm now either temporarily or permanently lactose intolerant. But! (big but) taking Lactaid makes me able to eat dairy anytime. It's really working for me. Part of why I persist in eating dairy is because I need to nutrition, I drink raw milk and I eat lots of organic grass-fed yogurt, because I need the calories and nutrition. You might want to try taking a lactase enzyme supplement for a few days, take one as soon as you buy it, then one with every meal that has dairy. There's directions on the box. Hope this helps!

oh, I had the peely lip thing too. It goes away eventually, I used a topical steroid for pain relief for a while.

Acersma Rookie
Acersma
Posted

I am starting to discover problems w/ dairy as well. Was not a problem a month ago. Last week I ate yogart (gluten free) and was bloated. I thought I got glutened elsewhere. Had cheese in my omelett the other day and was gurgly stomach, pains, and bloating. Had milk same night and all over again. I am going to stay away from dairy for a while again. Could be a new thing w/ me. My insides of my lips and cheeks are "torn" up as well. Peeling. I too love dairy and cheese is my fave snack but hey if it makes me miserable I am happy to find a new one. Just try going dairy free for a while.

Jody

SchnauzerMom Rookie
SchnauzerMom
Posted

It wouldn't hurt to go dairy free for a while just to see if it's a problem. It might be a temporary problem. Once your body heals you may be able to eat it again. Lactose pills work great for me. You might give them a try too.

24years free Newbie
24years free
Posted

You most likely have some hidden gluten in your diet. Some people are super sensitive and your peeling llips and mouth spots probably are lip gloss or lipstick related. Please read all labels carefully for anything that might be gluten-by-any-other-name. Hidden gluten is a serious issue, and the new labeling laws help, but don't assume anything. Sorry to scare you, but a slip up on my part 16 years in resulted in a Emergency room visit, and I will not repeat THAT again!

sfm Apprentice
sfm
Posted
Hi everyone. I am new to this forum. I am 20 years old and currently living with Celiac disease.

I have been going gluten free at the doctor's orders since around may. About 3 months ago. I started to feel better and was pretty much symptom free the entire month of June. Then one day, I accidently ate something with gluten in it, around July 1st, and I haven't been the same since. My stomach has been feeling very bubbly, it's been hurting after I eat, gas, occasional diarrhea, I'm gaining alot of weight in the stomach area, and I feel very foggy headed. All from one slip up. I mean, my symptoms aren't as bad as they were before going gluten-free, but it is still very bothersome...My mom suggested that I lay off dairy for a bit, or eat less of it for a while. I absolutely LOVE dairy. You just can't tell me that I can't eat dairy ever again! :( I am willing to improvise and eat less of it, but I can't just stop eatting it all together ><

Also since then, I got this white spot in my mouth and my lips peel like every 3 days. I've always had problems with my lips but not to this severity. I've been eatting gluten free since I was contaminated, no slip ups, and i'm still not getting any better. And i'm scared to death that maybe I might have some other problems going on in my body too. I can't afford to go to a doctor right now. My insurance ran up.

This is very difficult. All I hear from people is that things will get better. They were getting better until I slipped up that one time...But why is it taking so long to recover?

I've been cross-contaminated a few times since I went gluten free - and it always takes me several weeks before I feel myself starting to get better again. I think some people are just more sensitive.

The dairy is something I was very reluctant to give up, until I found that I am casein intolerant. I find that so unfair. It's not as painful as the gluten - I just feel very gassy and get diarrhea. But until I gave it up I was still feeling ill sometimes. To be perfectly honest, I do have dairy occasionally (ice cream, mostly, or cheese). But that is on very rare occasions. You might only be temporarilly lactose intolerant - some people are because the villi that get damaged are where the lactase enzyme is produced, and until they heal, they can't handle it. Could you give it up temporarily?

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Electra375 Newbie
Electra375
Posted

The gaining weight in the stomach would lead me to believe something else was going on like Cushings or possibly a thyroid dysfunction. But give it some time before freaking out. It can take a while to get gluten out of your system.

Also those w celiac disease usually find they need to go Dairy free while their gut heals and then reintroduce it later usually without incident.

I would give up all dairy for 2 weeks to see how you feel. You can do anything for 2 weeks.

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

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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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

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