Cheated On Gluten

[abetterjulie]

I have been gluten free for seven years. I never cheat. Ever. I don't usually feel deprived, but lately I have been just as sick as I was at the beginning of this journey. I have diarrhea two and three times a day. Nothing I eat feels good to my mouth. If I could just stop eating altogether, I would.

Last night, I had had enough. I asked my DH to go buy my a regular donut. He was unhappy, but did so. Then, he and I had a massive blow-out fight. It is mostly better now, although he still doesn't seem to "get it". He says he refuses to "support" my decision to eat gluten. I just wanted him to be understanding. Anyway...

I didn't have any dramatic effects from eating the gluten (other than craving it now), but I know that it can have no symptoms at first. I called the GI doc this morning and am waiting to hear back about making an appt for a gluten trial and biopsy. The last one was without gluten, and my gut was fine. I think I need one ON gluten to verify that these dietary restrictions are necessary. I am wondering if it has been the dysautonomia all along? I did initially feel better when I went off gluten, but within a year, I was starting to gradually decline again.

I am wondering if the diarrhea is part of the dysautonomia? If so, is there a test to be sure or do I have to rule out all the other possibilities? I seem to do best when I don't eat, but unfortunately, that isn't an option. How do I know if I am absorbing what I need to feel better and have a functional nervous system if I am having these intestinal issues? I guess I need to ask the GI doc that as well.

I guess I could do some kind of rotational diet, but it is such a ginormous pain!

Thanks for listening. I just needed to vent and get a plan. I am sure many of you have food sensitivities and allergies to all kinds of different things.

[lieze]

Yes I think allergies were causing a lot of my GI issues-but I won't know for months after adjusting my diet whether I am any better.

I also felt better not eating-weird huh?

[icesktr189]

Dirreah is very common with dysautonomia. Honestly, I have changed my diet so many times but no great effects except less migraines. I cut out gluten, sugar, caffiene and bad foods and didnt see much difference with my POTS.

I do try to always eat healthy, but if I want a brownie or cookie I eat it. I feel like we have already given up so much that we shouldnt have to sacrifice those random indulgences

[songcanary]

I completely and totally understand. If I could just avoid food altogether, I think my body would be happy if it could stay alive any other way.

I react to almost everything. And get this---right now I am having a reaction to Magnesium Citrate for a colonoscopy prep. My face is majorly flushed and the crap made me dizzy in addition to tasting like carbonated paint thinner. I mean really, how much are we supposed to take here???!

[Dizzysillyak]

As far as I can tell, if diarhea is common with dysautonomia, it's because most of us have undiagnosed and or untreated food intolerances. Too much magnesium would do this too.

A stool test would tell you if you're getting gluten in your diet despite efforts to be GF. Are you eating those GF processed foods ? They're not regulated so you'll still be eating some gluten all the time. I still had "D" for the first 9 months after going GF because I didn't know this.

Getting tested for other food intolerances might help too ..

tc ... dizzy

PS. I would've been sick as a dog if I'd eaten that donut but several of my celiac friends can get away with it and only have mild symptoms later. If I remember this correctly, the damage even though you're syptom free, can take up to 3 weeks to heal ... the folks at www.glutenfreeandbeyond.org are better at remembering the details than I am.

[icesktr189]

I think my d is ulcertive colitis in the making. My mom and uncle had it and had their colons removed.

Hopefully its not but huge chance there is

[issie]

I completely and totally understand. If I could just avoid food altogether, I think my body would be happy if it could stay alive any other way.

I react to almost everything. And get this---right now I am having a reaction to Magnesium Citrate for a colonoscopy prep. My face is majorly flushed and the crap made me dizzy in addition to tasting like carbonated paint thinner. I mean really, how much are we supposed to take here???!

You're not reacting to this any different than anyone else. That colonoscopy prep is horrible. I have chills and naseau and all kinds of weirdness. It gives me a few of hours of thinking I'll just die now - and then I don't. You'll make it through - it's no fun.

[abetterjulie]

As far as I can tell, if diarhea is common with dysautonomia, it's because most of us have undiagnosed and or untreated food intolerances. Too much magnesium would do this too.

A stool test would tell you if you're getting gluten in your diet despite efforts to be GF. Are you eating those GF processed foods ? They're not regulated so you'll still be eating some gluten all the time. I still had "D" for the first 9 months after going GF because I didn't know this.

No, we rarely eat any processed stuff. I actually grind my own grains to make my own flour mix. The little that we do eat processed is stuff I have been eating for years, and the bloodwork in the past has shown I am truly GF.

I have been keeping a journal of time/symptom/activity/bp/medication/food for a month now, and nothing seems to fall into a pattern.

I am just going to do the elimination diet and get it over with. Today I have had brown rice and tea. Whee.

[issie]

I think my d is ulcertive colitis in the making. My mom and uncle had it and had their colons removed.

Hopefully its not but huge chance there is

Are you on dairy, dani? You may have your intestinal flora out of balance and have a yeast thing going on. Get off dairy, glutten and sugar and take a good probiotic (dairy free). Also, try to get some Symbiotics Colostrum - the one for the Immune System is best. It has even kept crohns at bay. Also, coconut oil is a real good healer. It will help kill a yeast problem and get the colon soothed. Remember, when you kill off yeast, you may get sicker to start with, then you will get better. But, you can't eat sugar - sugar feeds the little buggers and they will continue to multiply. Yeast is what eats your body when you die - you are a living - dying person - if that's the problem. If you get on top of it and cut these things out - you are likely to be a different person. I've had ulcerative colitis and nearly died from it - it is NOT fun.

[Dizzysillyak]

No, we rarely eat any processed stuff. I actually grind my own grains to make my own flour mix. The little that we do eat processed is stuff I have been eating for years, and the bloodwork in the past has shown I am truly GF.

I have been keeping a journal of time/symptom/activity/bp/medication/food for a month now, and nothing seems to fall into a pattern.

I am just going to do the elimination diet and get it over with. Today I have had brown rice and tea. Whee.

I can't believe you grind your own grains ... I did that too for a little while until I figured out that all grains made me feel weird. I think this is because I have chronic hypoglycemia though.

Sadly, manufacturers are known to change their ingredents without telling us. In fact, I ran into a situation early on where "Back to Nature" told me that I had to give them a UPC so that they could verify that my box of crackers were GF. Otherwise, they couldn't guarantee it ...

My bloodwork never caught my antibodies after going GF but the stool test did.

Sorry to hear you're having to do the elimination diet. I know how much it *****. Hopefully, you'll get to the bottom of all this quickly ...

btw .. why not just eat some wholesome foods that you NEVER eat instead of going with the brown rice and tea ? I'm sure there are some exciting veggies you've been wanting to try ... lol .. seriously though, do you have a Whole Foods nearby ? They've got a GREAT selection of meats, fruits and veggies ...

good luck .. dizzy

[issie]

There is glutten in rice and corn too. Just not all people react to them. You may need to totally go off of grain.

[abetterjulie]

btw .. why not just eat some wholesome foods that you NEVER eat instead of going with the brown rice and tea ? I'm sure there are some exciting veggies you've been wanting to try ... lol .. seriously though, do you have a Whole Foods nearby ? They've got a GREAT selection of meats, fruits and veggies ...

good luck .. dizzy

I actually help run a local, organic produce/food co-op. I need to find out what the problem is and there isn't any way to do that unless I start from the beginning. We only eat foods certified gluten free, so I really don't think the issue is hidden gluten, but thanks.

[icesktr189]

Hey issie!

Im no longer on diary but ive cheated a couple times and it didnt seem to do anything.

Right now I dont have too much d, but I have very frequent bms. I think its also because my POTS is so.bad.

Ive been laying off sugar but its hard for me. Lol

im really hoping it isnt. My mom has had so many surgeries. My twin brothers pregnancy was her trigger. My uncles was multiple antibiotic use.

[icesktr189]

Oh I also take grapefruit seed extract for yeast

[Dizzysillyak]

I actually help run a local, organic produce/food co-op. I need to find out what the problem is and there isn't any way to do that unless I start from the beginning. We only eat foods certified gluten free, so I really don't think the issue is hidden gluten, but thanks.

that's so cool that you help run an organic produce / food co-op ... how convenient.

Not to beat a dead horse but even the certified gf foods are cross contaminated. I'm fairly certain they can have 20 ppm and still be certified by the group who's doing that.

I could be wrong and their standard could be 5 ppm ... I just read an article that stated testing can only go as low as 5ppm so that would be the least amount they could test for .. the FDA doesn't have any standards established yet though ...

are you familiar with www.glutenfreeandbeyond.org ? That's where I get my gluten info. They're great about posting the latest info ...

I'm not trying to be a pest .. really .. lol ... tc ... dizzy

here's that article ...

http://www.foodnavigator-usa.com/Financial-Industry/Gaining-loyalty-in-the-gluten-free-market

[sandymbme]

After my Celiac diagnosis, I went strict gluten free. I'm forced to stick with it, whether I like it or not. I know someone said that trace amount of gluten from cross contamination can cause Celiacs to have damage for "up to three weeks, even if they don't have symptoms". That is actually incorrect. Trace amounts of gluten, even from cross contamination can cause potentially IRREPARABLE damage. So on the rare occasions I do go out, (getting to be less all the time, seems even trace cross contamination for me personally always causes symptoms. I can control my environment much better at home.) I make a point of telling the staff that gluten will KILL me. Just to make sure that they don't say something is gluten free without checking. For what it's worth, my blood test was negative, but we later discovered that a low IgA rendered it a false negative. So further evaluation based on genetic testing, plus symptoms, plus adopting a gluten free diet led to my diagnosis.

Sandy

[ramakentesh]

Your stomach motility and general irritation level is heavily affected by your autonomic system, fluctuations in serotonin and other chemicals and it seems part and parcel with POTS.

ive tried all sorts of diets. None have helped so I just enjoy what I like.

[sue1234]

I would like to jump in and say that I have never read anywhere that rice has gluten. There is the "sticky" rice, which is called "glutinous rice" and used in sushi, etc., but I actually talked to someone with the Celiac Society(?) and asked if glutinous rice contained gluten related to celiac, and they said no. And, I believe rice is one of the few gluten-free grains.

[issie]

I would like to jump in and say that I have never read anywhere that rice has gluten. There is the "sticky" rice, which is called "glutinous rice" and used in sushi, etc., but I actually talked to someone with the Celiac Society(?) and asked if glutinous rice contained gluten related to celiac, and they said no. And, I believe rice is one of the few gluten-free grains.

According to the research I've done - there isn't glutten like is in wheat - but there is a protein called glutenin. In wheat there is gliadin and glutenin. Gluten forms when glutenin cross links - it has to do with amino acid sequences. So, there are people allergic to rice - only about 10% - but there is a possible problem with it. Some people don't break down these proteins properly and get allergy symptoms from them.

My sister has a much harder time with rice than any other grain. Since grains are grasses - if you have problems with grass allergies - consider this as a possible issue.

[sue1234]

Well, I guess in that case it is a "grass" allergy that affects these 10% that react to rice. I don't think rice has any affect celiac-wise.

[issie]

Well, I guess in that case it is a "grass" allergy that affects these 10% that react to rice. I don't think rice has any affect celiac-wise.

Still up for debate - but I'm not going to debate it. I think more study needs to be done on it. (I know you have special interest in rice - but it could possibly be one of the problems.) People are trying to go glutten free, but it may be more than the one type of glutten it could be both types and the amino acids that they have in them. If things stick together and will form a ball - then there is a certain amount of glutten in it. Which type of protein - is another subject. Do an elimination of all grains and add one back at a time. See if rice or corn or even known glutten grains have an effect on you. Just because the Celiac Society says you can eat rice - it doesn't mean YOU should eat rice. Everyone is different. I have periods where I can eat rice with no problems - then there are times that rice will cause a really bad allergic reaction. If there are mast cell issues and possible GI problems - look at this possibility. We may not be breaking down the proteins (amino acids) correctly.

[sue1234]

I guess what I am saying is, according to the FDA, the various Celiac groups(societies, .orgs, etc.) and dieticians, rice is a GLUTEN-FREE food. So, as far as a celiac looking for gluten-free foods, rice is allowed. Now, if someone has an odd allergy to various proteins, that is a different story. Rice is medically known to be one of the least "allergen" foods, and that is why pediatricians start babies on rice cereal as their first food.

Now, when you mention that you can sometimes eat rice and have no problem, and other times it gives you a bad reaction, that makes me think of cross-contamination issues at the processing and/or packaging level.

[issie]

Now, when you mention that you can sometimes eat rice and have no problem, and other times it gives you a bad reaction, that makes me think of cross-contamination issues at the processing and/or packaging level.

Don't think that's the case, because it can be with the same loaf of rice bread. If I have a reaction, I freeze it and go back to it maybe two weeks later and it will be fine. I think it's how our bodies are functioning at the time. Like Julie says about mast cell - she's allergic to nothing, but reacts to everything. I think we can have periods where that can be the case with what ever we are trying to eat or things that we are exposed to environmentally. When our autonomic systems are out of whack and that affects every function of our bodies - we never know when things are going to go wacky and we will have an issue. That's why I think it's important not to rule out something, that could be a possibility - even if we'd rather that not be the case. (Don't take it so personal - it's not against you or your rice - just an observation. I still love ya!)

[Sarah4444]

Can someone tell me if it is abnormal to have ANY antibodies to gluten? I had the bloodwork done for Celiac disease (anti-gliadin and anti-something else I forget) and I had some antibodies to both even though I had been avoiding gluten for several months by then. But the results showed that the anti-bodies were in the reference range so it said "negative" for both.

Are there some people out there with no gluten antibodies? Would the fact that I had some even when trying to avoid gluten suggest that I might have abnormally high levels when eating gluten? I haven't had the energy to look into this whole area yet, am just avoiding gluten - any info would be appreciated.

[sue1234]

How many more emoticons can I use to say I do not take it personally!! You are still a great POTS BFF!! I don't mind the conversation on things that we may not see eye to eye on. I do know that we see ALOT more eye to eye on alot of POTS issues. And I think all the in depth convo helps bring things up that may hold clues.

For instance, what if we all forgot to mention one symptom that we tend to overlook, because we are so used to it, and think it is a quirky-us thing. Like, what if we all found out that we started growing purple hair one year before POTS, but never mentioned it because our family tree is full of people with purple hair, so nothing unusual to us? Of course, that is an exxageration, but that's why I like us talking in depth about things, because we might just find some crucial links!