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    Do you have questions about celiac disease or the gluten-free diet?

suzimarie06

Frustrated And Still Not Feeling Well!

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I have officially been diagnosed and on the gluten free diet for about 6 weeks now.

I've been trying my hardest to be gluten free. I eat a lot of fruit, veggies, meat, and gluten free food from the health store. Though, I'm sure I get glutened more than I know just because I live in a house with seven other ppl, my dad being the only other on the diet.

I'm frustrated because I still always feel so sick. I have migraines and am beyond tired all the time. I can sleep straight for 12 hours and then I'm still tired and groggy the rest of the day. Even when I want to get out, my body doesnt want to let me, it is just exhausted. I have other symptoms like the nausea and stomach pain, but its the fatigue and grogginess and feeling that I'm completly losing it that bothers me. I just can't seem to focus.

Also, the lymphnodes in my throat are swollen. One side is more swollen than the other, but it has been this way for over 2 months now. I had gone to the med center and they checked for strep and mono, both came back negative. My throat doesnt usually hurt, sometimes it's just sore. I'm going to school for medical assisting and the other day we were learning how to look in the nose, ears , and throat. My teacher saw that it was swollen and I have small bumps on the back of my tongue. She said those bumps mean there is some sort of infection, or someone could get them if they have a cold. Her response to mine was that with the Celiac Disease my body is going through a lot of changes and thats probably the reason for it.

I know she can't tell me what is wrong, but it's frustrating. Should I be worried about it? Or take my teacher's word that it should eventually go away?

As far as the migraines go, what pain relievers are gluten free? I believe I have DH (I'm going to the dermatologist in the beginning of January) and saw somewhere that certain pain relievers can actually make DH worse. So I need one that is gluten free and is okay to take with DH!

I didnt notice the DH rash until shortly after I started the diet, isnt it supposed to go away with the gluten free diet? It's mostly on my hands and arms, and it itches like crazy!! Will it eventually go away with the diet? Or do I need medicine?

I'm 19 and am struggling so so much with having Celiac Disease. It's taking a big hit on my social life and with my family..as I am always sick or tired or just grumpy. I get really sick when I eat gluten, but I'm sick on the gluten free diet too. So it is hard to not just eat gluten, thinking that I'll just be sick anyways.

Am I still not feeling well just b/c I'm still new to the diet and it's still working the gluten out of my system? Or could it be because I work at a pizza place? (I'm working to get out of there asap)

Or could something else be going on? I've tried getting to the doctor, but he ended up needing to leave town and now I'm not scheduled to see him until the middle of January.

I want to start feeling better sooo bad. I feel like such a burden on my family right now..with the extra expenses on food and being so moody all the time.

I'm trying to stay strong and be okay, but it's getting really really hard. It's only been 6 weeks...

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sorry, im new at this and didnt realize i was posting this in the section about weight issues relating to celiac.

i've tried finding a way to delete my post and repost it somewhere else, but i cant figure that out either.

sorry! ill be more careful next time :)

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It's very frustrating to be following the diet and still feeling sick. From what both my son and i experienced, it takes a while to feel better. However, you might also be reacting to something other than gluten. Both Carl and I are also sensitive to corn and dairy. I also have difficulty with potatoes and tomatoes, but it's not too bad if I only have them occasionally. Soy is another common problem for people.

It is also possible that you do have a genuine infection that is leading you to still feel sick. If your doctor is helpful, you might want to see if you can find a naturopath or nutritionist in your area that is familiar with celiac and also suppliments to help support your recovery.

But, despite it, don't give up.

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Hi and welcome to the board :)

I moved your topic, so no worries about that.

First, I would urge you to quit working at the pizza place. I know you said you were working on it, but with all the dough and flour in the air, you probably won't begin to heal while there.

6 weeks is a short time, but most people feel some improvement by that time. Have you checked your personal care products for gluten? Also, since your dad is gluten-free, you probably know about cross contamination in the kitchen--separate toaster, collander, wooden boards and utensils? Be careful of dish towels, too. Keep yours separate.

I can't be of too much help for migraines--I know that Tylenol Extra Strength Caplets and Extra Strength Bufferin are both gluten-free. If you get a prescription, you'll have to check the gluten status with the manufacturer.

Good idea to stick to the naturally gluten-free foods for now, and even be wary of packaged, processed gluten-free foods at the beginning. Some are made on shared equipment as gluten, and even the gluten-free flours can be too much for your healing system to handle right now.

Also, I would suggest you go dairy free (if you aren't already) for a while until you are feeling better. The tips of the villi that are damaged by Celiac are what secrete the enzyme that helps digest dairy foods. 3 months is a good idea--then try it again if you want to see if you can handle it.

I don't have DH, so I'll leave that to someone with experience.

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I think working at a pizza place is a pretty big risk. You probably won't know what's what until you stop working there, until then it could always just be that you are continually glutened. Even if it's just in a small way if it is happening all the time you just won't heal. So personally I would say don't start worrying about things like cutting out dairy before you have quit that job, if you don't start feeling beter fairly soon after that, you can start to look for other answers.

Pauliina

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I am going to place my "vote" with find a new job and limit dairy (at least for a little while) but placing the new job ahead of everything else, I also would try to stay out of the "food market" when finding a new job, many restraunts are going to give you the same levels of possible CC you have now.

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Suzi,

You have to get out of that pizza place! Every time you breathe in the flour in the air, you are ingesting gluten. You might as well be eating a cracker every day. I think once you get out of the pizza place, you will start to feel better.

When I get glutened, my throat hurts too and my lymph nodes swell up. I also get those bumps on the back of my tongue like you do. I'm not sure why gluten would cause them to appear, but in my case I know that it is gluten and not an infection. But my case is a little different because I have refractory sprue and I don't eat anymore. But back when I did eat, I would have the same symptoms as you all the time. But I think you'll start to experience positive changes as soon as you find another job. So good luck, and I hope you feel better.

-Brian

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Like everyone else has said, its time for a new job. I know that can be a daunting thing to do, especially when your not feeling well, but I really think another sort of job will be better for your health. If you are a waitress or like food service you can probably work in another sort of restaurant, but I'd pick one that doesn't do a lot of on site baking! Think: book store!

I've been gluten-free for over 6 years now and I'm not sure if you've noticed that so many people on this list that have signatures often include other health issues they have and if you start reading those signatures it becomes clear pretty fast that a whole bunch of us have a lot of other health and GI sort of issues going on. I know, just like so many here, I do too.

I never (to my knowledge) had an allergy before and now all of a sudden I have tons... food and environmental. On top of that I also have eosinophilic gastroenteritis another sort of GI disease. It's my feeling that my Celiac disease went untreated for so long (11 years) and it being a sort of auto immune disorder that our immune systems get very messed up and hence the other health issues and allergies so many of us seem to have.

So my point is, the quest for all of us Celiac people of good health... usually takes a while. I'd start with the job and trying to be as gluten-free at home as you can. This forum is so willing to help you with questions and ideas. If I hadn't found all these great people I know I'd still be sick. I'd have never considered shampoo, body lotions, my dog food, etc. So start asking questions.... I know there are a lot of over the counter meds and Rx meds that do contain gluten so ask here or call the manufacturer. At least nowadays almost every company has allergy information (and gluten info) at their fingertips.

Look at it as an adventure to better health, its going to be a journey, it certainly was for me, but I did get better, it took a while but its worth it!

Susan

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:( job

But don't discount the dairy part. Like Patti said, the damaged villi just aren't capable of producing what you need to digest dairy yet.

You probably can't find a new job today, but you CAN go dairy-free today. Not forever. Just a few months until the villi heal.

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Hi Suzimarie,

I agree with the above recommendations. Unfortunately your feelings, physically and emotionally, are quite common. I am sure I'm not the only one who can relate to your problems right now.

I was also in universoty when I was diagnosed and dealing with all the "other issues" that come along with Celiac. It was hard to concentrate and focus in school, I tried to avoid social outings because I of the food and because I didn't have enough energy. The list goes on and on.

I don't want to repeat the other's posts, but I recommend removing yourself from any possible environments of cross-contamination. With repsect to the lactose, dairy often causes a mucus response in the body. Stuffy nose, sore throat, etc. So, really give that a try.

I had patches of DH and the doctor (who likely wasn't very informed on Celiac) gave me some cream to take the itch away. It worked, but now the DH just comes out in times of stress or if I accidently get glutened.

Things WILL get better. Stick to it and inform yourself. I recommend looking into The Paleo Diet. Of the hundred of things I tried, this gave me some relief.

Best wishes,

Heather : )

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It sounds to me like you may have a sinus infection. Sinus headaches can be very severe and mimic migraines. And infected sinus post nasal drip can irritate your throat and cause the patches and soreness, and swell the lymph nodes. Do you have any congestion?

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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