Going Off Of Gluten Free Diet

[Susan123]

Is there anything I should be aware about going off of a gluten free diet? BESIDES the obvious symptoms. For example, Vegetarians get really sick if they eat meat because there body is not used to digesting the meat. Is there a transitional period with digesting wheat again. gluten-free for about a year.

[celiac3270]

Well, if you're referring to intentionally going off the diet, two things:

- I have no idea why you'd want to

- You'd have your obvious short-term symptoms, but then, of course, the potential to develop long-term complications: cancer, osteoporosis, etc.

If you mean, what would happen if you accidentally ingested wheat, then:

- Your previous symptoms would come back, possibly just as strongly as before.

- Even with just a tiny amount of gluten, since you've been gluten-free for a while, your intestines would take a long time to heal again since you're not used to wheat. Eventually, you'd return to your pre-gluten-free diet condition

[lovegrov]

I assumed she was doing a challenge.

richard

[Susan123]

Sorry I lost my internet connection for awhile.

No actually I don't have Celiac just sensitivity so no damage whatsoever.

I actually have been off of the gluten-free diet for about a month now and no symptoms whatsoever

Keeping fingers crossed.

Why would anybody want to go off of a gluten-free diet? In mind opinion if you don't need to be on it I don't know why anybody in their right mind would be on it. It is the worst diet out there. :-)

Bottom line is I have a Wheat allergy and gluten sensitivity but tolerate certain levels. So far so good. Never really had symptoms before.

[tarnalberry]

From everything I have ever read, having gluten sensitivity but no damage only means that you haven't been producing antibodies long enough to have produced significant damage in the intestines, so I would at the least encourage you to have repeat biopsies over the years to confirm that you do not develop damage. (Don't rely on symptoms - we all know there are too many silent celiacs out there to assume we're clear if we've got no symptoms.)

BTW, if you think a gluten-free diet is hard, try a very low oxalate diet! Now there's a restrictive diet! :-P

[lovegrov]

I'm not saying the gluten-free diet is great, but hidden corn and soy is actually much harder than hidden wheat. And much more pervasive. Or you could be diabetic, or...

But I certainly agree I wouldn't be on it I didn't have to. You should continue to be tested over the years.

richard

[burdee]

Susan123: Just curious, but how did you discover you were gluten 'sensitive' in the first place? Why would your doctor test you for celiac, if you didn't complain of 'symptoms'? Were you being tested for allergies to other foods? Did you suspect celiac, but tests came back negative? You said you have a 'wheat allergy and gluten sensitivity' but can 'tolerate certain levels'. Were those your words or your doctor's diagnosis? How do you know how much you can 'tolerate' if you don't have symptoms to tell you that you have gone beyond a certain tolerable level?

Perhaps my excruciatingly painful celiac symptoms are a blessing in disguise. Pain was a great motivator to make me avoid all gluten (as well as dairy) even before I received my Enterolab diagnosis (gluten/casein antibodies, celiac gene). Until the pains became so severe, I didn't suspect I was celiac because I didn't have the 'classic diarrhea & weight loss'. When I finally learned about other celiac symptoms, I could trace those back (about 50 years) to my early childhood and throughout my adult life. After getting the "IBS" misdiagnosis 10 years ago, I kinda' accepted that my symptoms were just normal for me, 'though I tried all kinds of high fiber diets for regularity (since constipation as well as cramping pain was one of my symptoms). OK, I'm rambling again ... To make a long story short: If your celiac blood/biopsy tests came back negative or your doctor told you 'no celiac' but 'gluten sensitivity' (I'm just guessing here, because I don't have the whole story ), just keep eating all the gluten you want. Eventually you may develop more obvious symptoms that make you want to reconsider how much gluten you can tolerate.

BURDEE

[Guest jhmom]

Susan:

No actually I don't have Celiac just sensitivity so no damage whatsoever

I was tested through Enterolab and my test results were positive for "gluten sensitivity", I also tested positive for "malabsorption due to small intestinal damage". It takes time for damage to show up in an endoscopy biopsy if that is how you were tested and know there is no damage. I had an endoscopy 2 months before my Enterolab testing and it showed "patchy inflammation".

I strongly urge you NOT to go off the diet just because you have gluten sensitivity. Both Celiac and gluten sensitivity are treated the same way whether you have damage or not and that is by a strict adherence to a gluten-free diet for life. As you probably have read some people with Celiac never show GI symptoms but that does not mean that damage is not being done to your body.

[flagbabyds]

You should defenitley stay in the diet, even if you don't have damage that means they probably caught celiac disease at an early stage. Even if you don't have symptoms it is still doing damage to your intestines and there are some celiacs who were just tested because someone else in their family had it or they were short. My sister is A symptomatic and doesn't get symptoms until they just suddnley build up and hit her and she gets really sick.

[Susan123]

This is going to be short because I typed a long message and then accidentially deleted it. Urghhh..

Thanks for the responses but no need to worry. This is under the advice of the co-director of University of Maryland's Celiac Research Center.

Just to answer some questions first: I started out sick after returning home from vacation. All of a sudden at 30 years of age with no prior issues. My cousin and my uncle also were sick and it was believed that it was the water (ghiardia). I took antibiotics and it went away but took a couple of months to feel normal again. During this time I got tested for Celiac. Tissue Transglutimase is negative, IgG negative and IgA high. Hence, I went to get a endoscopy and a colonoscopy with an gastroenterologist. Both results- totally normal. The celiac center reviewed the slides for signs of "Pre-Celiac damage" and found none. Result- diagnosis I don't have Celiac just gluten sensitivity and when I eat gluten it will not damage my insides now or in the future. According to the celiac center, elevated IgA does not specify auto-immune response or sensitivity/allergy. So with an isolated high IgA you can not make the assumption that you have celiac. You could have an infection such as mono or strep throat and it can cause an elevated level. The reason they are saying I am sensitive is because I have a wheat allergy confirmed by tests. Thanks for worrying and don't fear I have to see my gastroenterologist every five years for something else so he will check it then. Thanks for the info.

[flagbabyds]

I don't really agree with them... (not saying they are wrong just my opinion) If you feel better on the diet then stay on it and that's that. You don't need a doctors diagnosis to how you feel.

[Guest jhmom]

Result- diagnosis I don't have Celiac just gluten sensitivity and when I eat gluten it will not damage my insides now or in the future.

I am not sure I agree with this statement from your doctor. As I stated above I was dx with gluten sensitivity and did have "patchy inflammation" on my biopsy (not enough for Gastro to dx) and stool test that showed "malabsorption due to small intestinal damage".

I am glad you are feeling well and in charge of your health, I just wanted to tell you of my experience.

[Susan123]

Thanks again for the concern but if you can't believe one of the two top doctors in the country for Celiac who can you believe. The tests that are out there are the result of their research. They are the pioneers for this disease. Like I said I am going to continue to check it out every 5 years but for now the gluten-free diet doesn't make me feel any better because I feel great on a normal diet. If anything the gluten-free diet makes me feel worse because I can't eat the foods I love.

[Guest jhmom]

It's good you plan on keeping an eye on things and getting checked every 5 years. I hope you continue to feel great while eating normal foods. Good luck to you and God Bless!

[burdee]

Hi Susan: Thanks for explaining your situation. Perhaps you should ask your doctor your original question "Is there anything I should be aware about going off a gluten free diet. Besides obvious symptoms." Most of us here have had such horrible experiences with ingesting gluten (pain, intestinal damage, debilitating symptoms, other autoimmune diseases), that the thought of purposely eating gluten containing foods is unthinkable. I can only speak of the awful recurrence of painful symptoms when I accidentally went 'off the gluten-free diet'. Maybe your doctor could tell you about experiences of other patients who returned to eating gluten after abstaining for a year.

BURDEE

[plantime]

The reason they are saying I am sensitive is because I have a wheat allergy confirmed by tests.

You have been diagnosed with a wheat allergy, so please do yourself a favor, and do not eat wheat! If I were you, I would still avoid gluten. I know the diet is a pain, but it is doable, and once you get used to it, it is easy. Because of your allergy, you will have to read labels for the rest of your life anyway, and you will have to avoid the main gluten-containing food for optimum health. Therefore, I believe it would just be common sense to be gluten free. Just my opinion!

[Susan123]

Not all food allergies produce symptoms. I do not have any symptoms when I eat wheat respiratory or gastrically. I just react strongly when high concentrated amounts are put under my skin. Being that I don't eat a loaf of bread at a time I feel fine when I eat wheat. I also have a corn allergy but am able to eat it w/o symptoms. Believe me I would not eat something if I knew it would cause me problems. I am very careful with what I eat and have been most of my life in general. I look at it as I only have one body and if I don't take care of it no one will. Thanks for all the posts.

[plantime]

All allergies produce symptoms. You are just not recognizing the symptoms in your body. A headache, muscle cramps, fatigue, joint pain, irritability, these are all symptoms of allergy. Respiratory and gastrically are just the most obvious ones. You have tested positive for wheat allergy. Eating it is a very big mistake. It is your health, ruin it if you want to.

Just so you know, I have allergies, too. I am speaking from experience. The symptoms I listed above are the ones that I got rid of when I quit eating wheat.

[dana-g]

Susan, I would think your allergist could tell you if you are doing anything harmful to yourself by eating wheat if you are allergic to it even though it doesn't produce any symptoms (lucky you!) Otherwise, have a Twinkie on me! Nice to hear somebody has gotten a reprieve!

Dana, Gloriously gluten-free

[Susan123]

Thank you. Mmmhh twinkie I haven't had that one yet. I guess I am confused (in response to plantime) My allergist said that responding positively to a food doesn't mean you will have symptoms. He said you can but you don't have to have any symptoms. He also said it wouldn't damage my body if I didn't produce symptoms. If you know different please let me know. How can headaches, irritability, fatique damage my body? I am asking because I am curious and because there is so much different information out there. I get headaches but mine continued during my whole year gluten-free. Mine are attributed to clenching my teeth when I sleep. I have a guard I use to eliminate the headaches. I am not irritable (that I know of :-) ), I get tired here and there but not any more than normal. Usually after a stressful day or a long night. After trying to think of anything that might be "abnormal" I can't think of anything. I get my bloodwork done every three months and everything is "great" as my doctor says. I do have joint pain in my knee but it has been confirmed it is the result of an injury. What other kind of symptoms would an allergy produce?

[plantime]

Whatever. You tested positive for the allergy, so your body does react. You just do not see what the reaction is. I am not going to tell you that you can eat wheat. My mom had the same attitude you are showing, and now she is dead. Her "non-reaction" caused her colon to rupture. Just because you are not seeing a reaction, does not mean it is not happening. I will not tell you that it is ok for you to eat wheat.

[Susan123]

I am sorry about your mom. I am not asking to see if it is ok I am just trying to understand what you are saying. You obviously have experience in this area and I am asking to better educate myself as well. I am sorry if I offend you with the questions. I am just trying to understand this and the only way I know how is to ask away.

[dianne]

Susan, i can't really contribute anything to the medical aspects of this discussion. However, I just wanted to say, that I believe everyone here just has your welfare in mind. I hope you take the advice with that in mind. Good luck with the future!

I'm curious, does your Celiac Center have a website?

Dianne

[plantime]

How can headaches, irritability, fatique damage my body?

What causes them is what damages your body. They also do damage to your psyche. After so long of being tired, or having a headache, or being irritable, you start to feel bad all over. You get depressed and angry. It is debilitating. Your allergist is probably doing what mine did: discount anything that is not an anaphylactic reaction. He says headaches and such are not caused by allergies, but my diet tests done by other doctors have proven otherwise. Eggs give me horrible migraines. They cause the lining of my brain to swell, which applies pressure to the brain, and causes some of the cells to rupture. The ruptured cells never heal, and after so many years of this damage, brain damage occurs. I could just suffer the headaches, and eat the eggs anyway, but unmeasurable damage now will add up to severe damage over time. I just do not like to see it happen to others, including you. I just want the best of health for all of us.

[Susan123]

Thank you. I never thought of it that way. I have a follow up appt with my allergist soon and I am going to bring this up to him and see what he says. The eating wheat right now is more for the Celiac Center to see what my antibody level is on and off of gluten. So I have another 2 mos. of it and then I go and see them again after getting my antibody level checked. So I have to a least wait until then to make any changes to my diet or it will screw up my test results.

Open Original Shared Link is the University of MD Center for Celiac Research's website

Thanks all for the concern and I am taking it all into account seriously.