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How Well Do You Feel Gluten Free?


dhiltonlittle

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dhiltonlittle Contributor

As long as there is no gluten in your diet do you generally feel ok or do you still experience symptoms?


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psawyer Proficient

My symptoms are long gone, but it took a few months on the gluten-free diet to accomplish that. I feel fine now.

Ahorsesoul Enthusiast

If all the hidden gluten out of my diet I am fine. For me, any tiny bit sets my body off. I thought I was doing great with a mixed kitchen. My dh only had his bread and wrapped snack in his own cabinet. But I've seen improvement in myself since my dh went gluten free and now the whole house is gluten free.

frogholler Newbie

As long as there is no gluten in your diet do you generally feel ok or do you still experience symptoms?

I went on a gluten free diet around 5 days ago and noticed positive changes within the first 24 hours. The first major change was the fact that I was no longer having coughing spells with a lot of mucous.Every morning, I would start coughing and produce a lot of mucous within minutes after getting up. That all stopped. Last Sat. night, I went to a friend's house for a pasta dinner and within minutes after consuming just a small amount of pasta and a few bites of garlic bread, my stomach literally blew up and the waist band of my slacks felt very tight. That's when I decided to go gluten free to see if I felt any different. I am a blood type O and knew I wasn't suppose to have wheat but never realized how important that fact was. I also had no energy and had to force myself to do any chores around the house. Now I feel more energized. My Dr. had some blood work done and I got the results today. The tests showed that I had Celiac disease and my intestines have already been damaged due to my diet but hopefully, if I'm careful and stick to the gluten free diet, I will overcome any other intestinal problems I have been coping with for awhile.

tmbarke Apprentice

As long as there is no gluten in your diet do you generally feel ok or do you still experience symptoms?

I feel like a new woman that has her own mind! Except when I crave a BKburger!

tarnalberry Community Regular

Well, many of us have other (sometimes related, sometimes unrelated) issues going on. I would say "I feel fine" but compared to others I know without other medical issues (particularly fibro, chronic migraines, and hypermobility (but not Ehler's Danlos)), I would never say I feel "great", but it's a relative term anyway. I certainly can still get an upset stomach or intestinal tract from some foods that aren't gluten. But that's a more complicated example. Learning to separate gluten-issues from other issues is an important thing to do. ;)

Reba32 Rookie

After going gluten free, I feel 100% better, but not 100%. If you follow.

I think after years of being malnourished and muscle wasting and whatnot, I will never be "normal". However, I feel soooooooooooooooo much better without gluten in my diet (and it was pretty much within 24 hours of going gluten free that I noticed a difference) that there is not a snowball's chance in hell that I would ever deliberately eat something that contained gluten!


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masterjen Explorer

I've been gluten-free for a month after being confirmed as having Celiac. I feel worse, not better, as I have rib discomfort, headaches, migraines and muscle weakness that I never had before being gluten-free.

MRM Apprentice

i could say the same as Reba32, 100% better but not 100%. i was excited this morning that i felt like blow drying my hair and brushing my teeth. a month or two ago i would have just sat back down and probably fallen asleep. i think i need to pull a few more things from my diet but everyday is better then the last.

Shannonlass Apprentice

I feel better in ways but it's hard to tell really as I had a 6 month run of hell prior to diagnosis. I moved to the Middle East at the end of last July. I had been suffering with nausea when eating/after eating for 3+ years but things deteriorated badly. I began to throw up as well. Then in mid november I got the most awful diarrhoea which continued for almost a month. I lost at least a stone weight. A parasite called giardia was apparently responsible (though they never got a positive test.) I was fine for 3 weeks then mid January the diarrhoea came back again. Lasted for a couple of weeks.In the meantime the nausea/vomitting had disappeared completely which was bizarre but meant I could eat normally for the first time in 6 months. My doctor referred me to a consultant and he was the one who diagnosed celiacs disease almost 5 weeks ago. I still suffer from bloating and flatulence but am hoping it will go away soon. I'm trying my best with the diet and for the most part coping well. I'm hoping to see more improvements soon.

serenajane Apprentice

I have been gluten free about 6 weeks now. After the first 2 weeks the fog lifted (eyes would feel heavy felt like I was looking at the world through a haze)

I felt less bloat at first. I am still making the frequent trips to the lavatory. I am still not fully absorbing the nutrients I should be. I have also gained a little weight not real happy about that. I am going to talk to my doc about seeing a nutritionist to help me balance the new way of eating.

Bottom line I am not going to cheat on purpose either I have excepted that this is what I need to do and thats what I must do. Now if the risk wasn't life threatening I can't say the same would be true. I am not a fan of a colostomy bag so I will be a good girl and follow the diet.

The good news is there are a lot of very talented and creative people that are working hard so that people in our situation don't have to feel left out.

marys gone crackers are my new favorite crackers

ciavyn Contributor

WHEN I haven't accidentally glutened myself, I feel GREAT! Really, really good, with very few GI issues. Unfortunately, it takes me about three weeks to get over being glutened. But I really do feel 100% better...I guess I'm lucky that way.

meatslayer Newbie

Learned I was Celiac one month ago. Gluten free for that month... feel so much better, it's crazy. Maybe not 100% but I'm not on the toilet 10 times a day, I'm getting nutrients from my food again.

People like to moan and make misery out of their situations here, I say move on deal with it. I don't miss any thing, it made me sick. Moved on.....

jackay Enthusiast

I feel a lot better but still have insomnia, muscle pain, headaches and gas which I feel are from intestine candida and other food intolerances. The anxiety is gone and believe me that was extreme. The depression is better and I no longer have diarrhea so in some ways I am way better.

I know when I accidentally get glutened because I get diarrhea and depression that lasts for up to four days.

Lgood22573 Rookie

I feel absolutely fabulous. I am guessing, exactly like a "normal" person without illness feels like.

jackay Enthusiast

I feel absolutely fabulous. I am guessing, exactly like a "normal" person without illness feels like.

I hope to get to that point some day.

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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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