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A Celiac Seeking For Answers
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7 posts in this topic

hi all

1-I have been gluten-free for one month, many symptoms have vanished, but my immune system is still weak! I am still so sensitive to any thing little cold , I am as before all the time about to have a sur throut but thanks to not drinking or eating any thing cold at all. and my body is still bad at healing from cuts and infections.

2- I still don't understand the exact mechanism of celiac disease. immune system attacks all strange bodies comes to blood, so why when attacking gluten harm occurs to the villi? does the immune system attack the gluten only while it's been absorped by the villi so damage happens to it? I dont understand.

3- why products like makeups, soaps, shampoos, hairsprays, perfumes, etc..why should be gluten-free ?? how could they reach the intestines?

4- when glutened, how to deal with the problem? for example when I feel pain after eating a hiden gluten will it work to throw up?

thank you all

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I forgot to tell, that the worst my immune system is when I eat fruits!!!!

I can't understand why!!!

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hi all

1-I have been gluten-free for one month, many symptoms have vanished, but my immune system is still weak! I am still so sensitive to any thing little cold , I am as before all the time about to have a sur throut but thanks to not drinking or eating any thing cold at all. and my body is still bad at healing from cuts and infections.

2- I still don't understand the exact mechanism of celiac disease. immune system attacks all strange bodies comes to blood, so why when attacking gluten harm occurs to the villi? does the immune system attack the gluten only while it's been absorped by the villi so damage happens to it? I dont understand.

3- why products like makeups, soaps, shampoos, hairsprays, perfumes, etc..why should be gluten-free ?? how could they reach the intestines?

4- when glutened, how to deal with the problem? for example when I feel pain after eating a hiden gluten will it work to throw up?

thank you all

<{POST_SNAPBACK}>

You need to give the gluten-free more time. You didn't state how long you had been sick before going gluten-free, so we don't know how much damage has been done. Remember celiac disease is a malabsorption problem so your body wasn't getting the nutrients it needs to keep healthy and fight off infections. Slow healing is also a symptom of blood sugar problems, which seem to be common with celiac disease. Remember, autoimmune disorders tend to piggyback onto others. I was dx'd with hypoglycemia back in h.s. days. Healed slow then, and still do.

Your question about why the body attacks itself when gluten is ingested is a good one. And one that the experts don't understand completely either. There are a lot of things not understood about autoimmune diseases and why more research needs to be funded.

You would think that makeup and hair products would be okay, but look at it this way - you are carrying contaminates on your body. How many times a day do you scratch your head, but NOT wash your hands to remove the contaminate. Then pick up a gluten-free chip or something and eat it? Voila! the gluten is now in your body. Or when you wash your hair in the shower, can you keep the water from running down into your eyes, on your lips.... The less exposure, the better is the consensus when it comes to gluten.

And throwing up won't really do anything to stop the glutening. Once you feel the pain that means the gluten protein has reached your small intestine and you can't throw it back up from there. So the best bet is to be very very careful and maintain 100% gluten-free lifestyle. But it really isn't so bad after awhile - It will become second nature and easier to be 100% gluten-free than it is to be sick.

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thanks nettiebeads for responding

Slow healing is also a symptom of blood sugar problems, which seem to be common with celiac disease.

may you give me more details about that??

one time I had symptoms similar to diabetes , very frequent bath, hunger after eating, extreme fatigue after eating so that I can't move! this lasted for three days during them I thought I am 100% diabetic, but when I made tests sugar in blood was ok even during the past 2 months of the test( they can test how blood sugar was during the before months), at that time I was shocked how everything was ok!! and that diabetes symptoms went off after the tests!!!

I was and still sensitive to sugar, it causes anxiety for me and mizerable feeling.

what I am still confused about is that my sensitivity to things healthy and recommended for celiacs and for everybody like citrus fruits and garlic!!

the second day I eat these things I am semi-sur throut although I didn't eat or drink anything cold at all!!! and this is a huge problem how could I increase my immunitiy while I cant eat helpful things to the immune system like citrus fruits which include huge amounts of vitamin C??

what in the hell couses this sensitivity???

should I consider taking vitamin injections? and if I do, how long will it take?? six months until I heal???

And throwing up won't really do anything to stop the glutening. Once you feel the pain that means the gluten protein has reached your small intestine and you can't throw it back up from there.

I don't understand how food can reach small intestines after 10 minutes from eating! what a super protien is the gluten!!!

I read in this site about Additional Things to Beware of to Maintain a 100% Gluten-Free Diet

Toothpaste and mouthwash.

Medicines: many contain gluten.

from the ingredients of many medicines and toothpastes I can't figure if they contain gluten or don't, usually complicated chemical compounds are typed which can't be understood . how to deal with that????

final question:

are anitbiotics safe?? because I have been taking them during the past days for healing from a skin infection, but I am not feeling only that these antibiotics are doing nothing, I am also feeling they are weakening my immune system!!!

I think there is a complicated immune problem in my body so that it can't tolerate citrus fruits,garlic and antibiotics!!!!

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Well Seeker--maybe I can help too. Many celiacs have problems with sugar and it may just be that your system isnt able to deal with sugars yet and going gluten free has just allowed you to realize the problems sugars are causing you--they may always have been a problem, its just the gluten was a bigger problem. Many celiacs have to go dairy free in the beginning and find later they can add it back in. Some celiacs, like me, find that more and more foods cause intolerances over time. Fruits are full of natural sugars and it may just be that you will have to give them up for awhile. Let your body heal from the celiacs and then try adding fruits one at a time. Avoiding gluten at all times is necessary--even with your shampoos, soaps, make-up---especially medications. Many fillers are wheat based or barley. Medications are not regulated in the US like foods are. I am not sure where you are from. I truly think the US is way behind other countries in caring for our celiacs. You cant just ask a pharmacist either--you have to go straight to the companies. There is a company in New Jersey that makes medications for celiacs, I understand they formulate them so they are gluten free. I checked on a vitamin from Puritan Pride and they stated it is gluten free, but when I read the ingreds, it stated barely grass-----their disclaimer is that "they" do not feel there is a significant amount of gluten in the vitamin to consider it gluten---but that isnt up to them. If there isnt enough barley to consider it gluten, then why is there barley at all. If the amount is that insignificant, then it doesnt need to be there to begin with. We celiacs have to constantly be vigilant--only we can take care of us. Deb

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First off, one month is probably only making a dent in your recovery. Have patience... I work with a nurse who has Celiac, and she says 2 years is often how long it takes for total healing. I have been gluten-free for 8 months and have had some improvement, but still have not seen much improvement in muscle pain and energy levels. It will take your body time...however, I am glad you have received some relief so far.

On products--there is always a risk with lotion, shampoo etc that it could get in your mouth or that you might be one of those who has skin reactions. I suggest getting rid of all gluten-containing products. There are so many brands out there, you can always find a replacement. Think, gluten=enemy.

There is no much you can do to curb a gluten contamination. Patience again...and perhaps some herbal or medical remedies if they help you--like soothing tea or a stool softener temporarily. Those you will have to figure out by experimenting, carefully and reading what others try. But, there is no way to rush the gluten out of your system.

I would suggest you read "Wheat Free, Worry Free" by Danna Korn. This book will educate you on Celiac Disease and all about the gluten-free diet. It will teach you much... Good luck!

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thanks nettiebeads for responding

may you give me more details about that??

one time I had symptoms similar to diabetes , very frequent bath, hunger after eating, extreme fatigue after eating so that I can't move! this lasted for three days during them I thought I am 100% diabetic, but when I made tests sugar in blood was ok even during the past 2 months of the test( they can test how blood sugar was during the before months), at that time I was shocked how everything was ok!! and that diabetes symptoms went off after the tests!!!

I was and still sensitive to sugar, it causes anxiety for me and mizerable feeling.

what I am still confused about is that my sensitivity to things healthy and recommended for celiacs and for everybody like citrus fruits and garlic!!

the second day I eat these things I am semi-sur throut although I didn't eat or drink anything cold at all!!! and this is a huge problem how could I increase my immunitiy while I cant eat helpful things to the immune system like citrus fruits which include huge amounts of vitamin C??

what in the hell couses this sensitivity???

should I consider taking vitamin injections? and if I do, how long will it take?? six months until I heal???

I don't understand how food can reach small intestines after 10 minutes from eating! what a super protien is the gluten!!!

I read in this site about Additional Things to Beware of to Maintain a 100% Gluten-Free Diet

from the ingredients of many medicines and toothpastes I can't figure if they contain gluten or don't, usually complicated chemical compounds are typed which can't be understood . how to deal with that????

final question:

are anitbiotics safe??  because I have been taking them during the past days for healing from a skin infection, but I am not feeling only that these antibiotics are doing nothing, I am also feeling they are weakening my immune system!!!

I think there is a complicated immune problem in my body so that it can't tolerate citrus fruits,garlic and antibiotics!!!!

<{POST_SNAPBACK}>

It could be the sore throat is from acid reflux which may be cause by the malaborptions of food. I'd go down to basic food - chicken and fish are easily digested. Cooked veggies, especially potatoes. There was another post re: what do you eat when you're tummy is recovering from glutening. The hands down winner was mashed potatoes. Antibiotics are hard on the digestive system, period. Your dr may give you something to go with the antibiotic so it won't aggrevate you stomach so bad. celiac disease is a life of learning and patience. The healing takes time. Stay with it and don't get discouraged. And my blood sugar still stays naturally on the low side, but not enough to get my dr worried. But I haven't had a glucose fasting test since I was in h.s. The only time I spilled sugar was when I was preggers. But I know I'm better off w/o sugar. I go way up in energy but the crash afterwards isn't worth it.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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