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EazyE

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EazyE Newbie

I was diagnosed in January for Celiac. I had no symptoms, found out by accident during some blood work. Now after 4 months of following the gluten free diet, I feel worse than I have felt in my life. I get D every 3 or 4 days and feel sick that whole day or two. I've been late to work and have missed many social functions because of my upset stomach. I've been eating very carefully and only messed up 2 or 3 times. I had another endoscopy yesterday and the dr said everything was clear. No damage to my esophagus or stomach. So why oh why should I keep doing this. If I don't follow the gluten free diet, what are the chances I get something more terrible?


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foodiegurl Collaborator

I didn't have the biopsy, but I feel similar to you. Almost 2 months ago, my dr told me I had celiac, and i basically had no symptoms, except occasional gas and constipation (doesn't everyone?? :) Anyway, now that I have eliminated wheat, now is when I get tummy issues that I never even had before. It is frustrating. And like you, it makes me nervous to be in social situation or be in restaurants after scary glutenings i have read about.

I hope you feel better soon!!

valeriek Apprentice

I to was diagnosed in feb. when I went in for a simple check up. I then was sent to gi dr and he said I had celiacs. I had no symptoms except vitamin defecincy. Sorry I cant spell. Any way I know how you feel. There are days I am so nauseas I just have to lay in bed and take drugs that knock me out. It sucks. I do know from what I have read on here if you dont follow the diet you can get really bad things...even cancer. I would like to know the answer to this question too.

good luck

GlutenWrangler Contributor

If you don't follow the diet, you are setting yourself up for some major issues in the future. Celiacs have a higher risk for cancer than non-Celiacs. The only way to reduce that risk is to faithfully follow the diet. Even if you do not have symptoms, you are damaging your intestine each and every time you choose to eat something with gluten. In time, you could develop osteoporosis, malnutrition, lactose intolerance, neurological problems, psychiatric problems, and cancer. Many Celiacs experience worsening symptoms when they begin the diet. It is just your body's way of detoxing. Eventually your symptoms should dissipate. You might also want to look into other food allergies and intolerances if your symptoms continue. Nobody here can give you percentages because everyone is different. There's no way to accurately predict what your body might do. But if you want to live a healthy life, and avoid complications in the future, do yourself a favor and stick with the diet.

-Brian

SerenaM Newbie

I know when I started eating gluten free, other food intolerances started to surface, such as dairy, eggs, and others. So although I felt better initially, it started to seem like I was sick all over again. But after revamping my diet a few times, I finally feel great. If I were you, I would try an elimination diet, where you eliminate all common allergens and slowly reintroduce into your diet to see if they bother you.

mushroom Proficient

I have talked to many people who consider diarrhea, constipation and gas to be totally normal, and suffer them on a daily basis without giving it a second thought. I had become one of those and I did suffer. It sounds to me like some of you have had very little symptomatology and/or been diagnosed early, which is a good thing. Those of us who were really suffering felt such a relief after going gluten free that even the detoxing felt better than eating gluten. Maybe its all a matter of degree; your detoxing symptoms are worse than your gluten symptoms were.

Than as Brian mentioned, often after you have removed the gluten (which seems to override everything) other annoying intolerances show up too, as if saying "What about me??" Some of these are temporary intolerances, others linger and may eventually go away. But they do need to be addressed. For me it was soy whicch is in a lot of processed gluten free food. I was so busy looking for the gluten on the label that I overlooked the soy, which I had mostly avoided in the past.

Do hang in there because this, too, shall pass. Don't continue eating gluten until you develop other autoimmune diseases like I did.

Traveller Rookie

I've only been gluten-free for three weeks, yet I noticed problems with milk and milk products shortly after going on the non-gluten diet. The key phrase is "I noticed". Before I went gluten-free I experienced similar problems my entire life but thought that was just how life was -- the problems were "normal" -- all the more so because of a family history with milk and milk products. I didn't notice or think about the problems.

With a Celiac diagnosis, I now think more about what I eat and how my body reacts.

On more thought -- I look at the problems with milk and milk products as additional clues to how to get healthy. It's a blessing and not a curse.

But that's just me.


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krystal Rookie

I have noticed some of the same issues you are with regard to actually feeling worse when I eat gluten. I can only tell you my opinion:

1. I think my gluten intolerance caused me constipation. Removing gluten has left me with dairrhea because I find that I also have a dairy issue. THe two together somehow played off of each other.

2. You are completely changing your diet. Where you relied on your calories you're now replacing them with new foods. Most bodies don't take well to complete upheavals of diet. You're also likely stressed a bit about it, and stress never does a GI system good. It is going to take your body a while to readjust to this new way of eating.

3. You're paying closer attention to what's happening in your diet. I didn't even realize my gluten issue was wreaking havoc on my sinuses until I went gluten free. I just though my allergies had severely worsened. Now I know one of the first symptoms is when I start feeling sinus pressure.

I think it's like anything else - weight loss, etc. You have to give it time to really notice the difference, and the middle stage might not be all that great. It's a learning experience.

Mrs. Smith Explorer
I have talked to many people who consider diarrhea, constipation and gas to be totally normal, and suffer them on a daily basis without giving it a second thought. I had become one of those and I did suffer. It sounds to me like some of you have had very little symptomatology and/or been diagnosed early, which is a good thing. Those of us who were really suffering felt such a relief after going gluten free that even the detoxing felt better than eating gluten. Maybe its all a matter of degree; your detoxing symptoms are worse than your gluten symptoms were.

Than as Brian mentioned, often after you have removed the gluten (which seems to override everything) other annoying intolerances show up too, as if saying "What about me??" Some of these are temporary intolerances, others linger and may eventually go away. But they do need to be addressed. For me it was soy whicch is in a lot of processed gluten free food. I was so busy looking for the gluten on the label that I overlooked the soy, which I had mostly avoided in the past.

Do hang in there because this, too, shall pass. Don't continue eating gluten until you develop other autoimmune diseases like I did.

How long did the detox last? I have 4mos gluten free and I have symptoms during menses and when I am fatigued. MY stomach is way better but I am still having tingling and some muscle twitching and pain. Better than before gluten-free though. I dont eat dairy and watch the soy intake. All my blood tests are normal. Is this just something that takes time? And is it normal to develop DH after going gluten-free? Its not real bad but annoying.

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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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