Is This What Gluteining Feels Like? And Other Questions.

[SGWhiskers]

I've been gluten-free for 7 weeks. My symptoms have been mostly neurologic. There were really no digestive changes when I went gluten-free. I still feel horrible, but there have been a few baby steps towards progress. (Getting off NSAIDS). Saturday morning, I woke up feeling relatively clear headed. I had my gluten-free tea, plain walnuts, gluten-free rice chex, and DAILY meds (gluten-free vitamins, Strattera, and Cymbalta [EliLily will only confirm no wheat]). Within the hour, I started feeling my old headache, tension, buzzing, lethargy. That has continued for 48 hours. Then today, I got my version of soft stool with tiny bits of food. It was moderately painful, but brief. The neurologic relapse is feeling a bit better today. Canker sores are appearing. I'm thinking the most likely sources of gluten were invisible flying husband crumbs, invisible flying birdseed (gluten-free on special order), or my momentary relapse into nail biting).

At this point in my treatment, I have several questions for all of you.

1) Does this sound like any of you when you get glutened (especially the 48 hour delay in digestive symptoms)?

2) If I did gluten myself, does that mean I had been successful at being gluten-free?

3) If the most I can say after 7 weeks of gluten-free is that I'm off NSAIDS, can climb stairs a little easier, and walk a little faster, shouldn't I be asking for more? (I'd say I'm 4% better) My 2 month appt is coming up and I'm thinking about discussing the following with my rhumatologist:

* vitamin testing/injections

* investigating additional autoimmune diseases

* wondering about refractory (I don't want to think it, but I've had so little progress and all the incomplete diagnosis along the way make me on my guard for a better explaination).

4) When is the earliest I can get my first gluten-free bloodwork done accurately? I'm tissue transglutiminase IgG negative. Everything else was moderate to strong positive.

As far as my gluten-free attempts go, I'm eating almost all whole foods, stopped most beans/soy last week, kept old unscratched expensive teflon, DH still has gluten, no gluten baking for me, prerinse gluten plates for dishwasher, called company on all prepared foods (or lablel says gluten-free), no restaraunts, no makeup, Suave shampoo, B&Bworks shower gel (no obvious gluten), dishwash can opener, crest toothpaste.

Thanks for any opinions, personal experiences, and web links you can share.

SGWhiskers

[ravenwoodglass]

The 48 hour delay for GI symptoms is pretty usual. Some will have GI upset fairly quickly but for others it may take 3 to 5 days. It does sound like you got glutened. As long as you are not reglutening yourself you should feel better soon.

Everyone heals at different rates and at times the progress with issues can be so subtle that they are hard to see. Then all of a sudden you realize 'hey I haven't had a migraine in months' or that the world just seems brighter and you are full of energy. When the issues are ones like nerve or arthritic impact it can take a while to see a difference. One thing that can help you heal faster is some sublingual B12. It can help with healing the nerves and improve energy a bit also. Do make sure they are sublingual though.

[ang1e0251]

I have to add that I recently began the B12 and feel great! A big change in energy & well being. Thanks to all those who have been recommending it.

My neurological symptoms took time to clear up and improve. But the digestion sure sounds like you were glutened. I don't delay that long but many others report they do.Those husband crumbs are killer!

[Mike M]

I've been gluten-free for 7 weeks. My symptoms have been mostly neurologic. There were really no digestive changes when I went gluten-free. I still feel horrible, but there have been a few baby steps towards progress. (Getting off NSAIDS). Saturday morning, I woke up feeling relatively clear headed. I had my gluten-free tea, plain walnuts, gluten-free rice chex, and DAILY meds (gluten-free vitamins, Strattera, and Cymbalta [EliLily will only confirm no wheat]). Within the hour, I started feeling my old headache, tension, buzzing, lethargy. That has continued for 48 hours. Then today, I got my version of soft stool with tiny bits of food. It was moderately painful, but brief. The neurologic relapse is feeling a bit better today. Canker sores are appearing. I'm thinking the most likely sources of gluten were invisible flying husband crumbs, invisible flying birdseed (gluten-free on special order), or my momentary relapse into nail biting).

At this point in my treatment, I have several questions for all of you.

1) Does this sound like any of you when you get glutened (especially the 48 hour delay in digestive symptoms)?

2) If I did gluten myself, does that mean I had been successful at being gluten-free?

3) If the most I can say after 7 weeks of gluten-free is that I'm off NSAIDS, can climb stairs a little easier, and walk a little faster, shouldn't I be asking for more? (I'd say I'm 4% better) My 2 month appt is coming up and I'm thinking about discussing the following with my rhumatologist:

* vitamin testing/injections

* investigating additional autoimmune diseases

* wondering about refractory (I don't want to think it, but I've had so little progress and all the incomplete diagnosis along the way make me on my guard for a better explaination).

4) When is the earliest I can get my first gluten-free bloodwork done accurately? I'm tissue transglutiminase IgG negative. Everything else was moderate to strong positive.

As far as my gluten-free attempts go, I'm eating almost all whole foods, stopped most beans/soy last week, kept old unscratched expensive teflon, DH still has gluten, no gluten baking for me, prerinse gluten plates for dishwasher, called company on all prepared foods (or lablel says gluten-free), no restaraunts, no makeup, Suave shampoo, B&Bworks shower gel (no obvious gluten), dishwash can opener, crest toothpaste.

Thanks for any opinions, personal experiences, and web links you can share.

SGWhiskers

[Mike M]

Take a hard look at your vitamins and your other meds. Very few vitamins are gluten free even though they may say right on them GLUTEN FREE , if you still are having issues, look into other possible food allergies via testing. Corn for example can give a gluten type reaction to those sensitive or allergic. Hope this helps, all the best.

[ShayFL]

Country Life and Pure Encapsulations supplements are ALL gluten-free.

[Mike M]

Country Life and Pure Encapsulations supplements are ALL gluten-free.

Well, certainly don't want to turn this ugly here, but are you sure about that?

[MaryJones2]

I am really please with Freeda and Kirkman Labs brands. Many people here trust those brands as well.

[GlutenGalAZ]

Country Life and Pure Encapsulations supplements are ALL gluten-free.

Well, certainly don't want to turn this ugly here, but are you sure about that?

I take Nature Made and Spring Valley Vitamines

I was looking at the two that ShayFL posted and both websites say gluten free.

Country Life says at the bottom of their website:

Country Life Vitamins

[GlutenGalAZ]

SGWhiskers --

I hope you feel better soon. The beginning (first couple of months) are the worst. My new doctor (we moved last year) did some vitamin testing on me and I was really low on my B12... started to take those vitamines and watch what type of food I was taking in (healthy not healthy) and started to get some more engery.

I am still not at the point where I can go on long walks but I am trying to get more of my energy back.

When I do not feel well I like to take Epsom Salt baths or use a heating pad and drink lots of water.

Good Luck at your next appt

[SGWhiskers]

Thanks for the encouragement. I'm taking Nature Made Vitamins. They both say Gluten Free. How will I know if that is not true? Shouldn't it have to be gluten-free if it says gluten-free? I've been so careful with everything. That would tick me off. I would love to cut out my Cymbalta and Strattera, but I have such a depression relapse every time I try. It wouldn't be wise to do it in the winter months. (Up in Michigan, it is about to turn to winter).

Can you buy the sublingual B12 over the counter? Do they work as well as the shots?

I'm feeling much better today. For those of you with Gluten eating spouses, what kind of "rules" do they have? I've been trying to educate my hubby. He is trying very hard, but has not internalized the magnitude of the impact of invisible husband crumbs. I really don't think he was the one who glutened me. I think it was my nail biting or the bird.

Thank you for the tip on the epsom salt baths. I tried one several months ago after a massage, and it was wonderful. It must have something to do with the saltwater floating your body a little.

Most of the food I eat is very nutrient dense. I am allowing myself some gluten/salt/cholesterol free corn chips and occasional cans of fruit. Otherwise, I'm all fresh fruit, veggies, meat, rice, potatoes, Bob's Redmill gluten-free hot breakfast, OJ, tea, & nuts, olive oil. I feel so much less gassy after getting rid of the soy. I'll try it again in 6 months with Beano.

Thank you for all the support and answers. This is a good group of folks.

SGWhiskers

[Swansonjohnson]

Thanks for the encouragement. I'm taking Nature Made Vitamins. They both say Gluten Free. How will I know if that is not true? Shouldn't it have to be gluten-free if it says gluten-free? I've been so careful with everything. That would tick me off. I would love to cut out my Cymbalta and Strattera, but I have such a depression relapse every time I try. It wouldn't be wise to do it in the winter months. (Up in Michigan, it is about to turn to winter).

Can you buy the sublingual B12 over the counter? Do they work as well as the shots?

I'm feeling much better today. For those of you with Gluten eating spouses, what kind of "rules" do they have? I've been trying to educate my hubby. He is trying very hard, but has not internalized the magnitude of the impact of invisible husband crumbs. I really don't think he was the one who glutened me. I think it was my nail biting or the bird.

Thank you for the tip on the epsom salt baths. I tried one several months ago after a massage, and it was wonderful. It must have something to do with the saltwater floating your body a little.

Most of the food I eat is very nutrient dense. I am allowing myself some gluten/salt/cholesterol free corn chips and occasional cans of fruit. Otherwise, I'm all fresh fruit, veggies, meat, rice, potatoes, Bob's Redmill gluten-free hot breakfast, OJ, tea, & nuts, olive oil. I feel so much less gassy after getting rid of the soy. I'll try it again in 6 months with Beano.

Thank you for all the support and answers. This is a good group of folks.

SGWhiskers

Only my 3 year old son is confirmed celiac but we have a gluten-free home. We just eat out if we are dying for some wheat...not very often anymore. At first we just didn't make a big deal about it. We had our usual meals...stir fry, roast beef w/ mashed potatoes, shepherds pie, fish w/rice and veggies. I didn't expect my husband to eat gluten-free varieties of non gluten-free foods....that would have killed the man! He can eat burgers, subs...when he goes out for lunch and when we go out as a family. I hope this helps. We have been gluten free for a year now and I am just starting to experiment with stuff. Take your time and you will get there. I find that if I make a list of what we will be eating for the next 2 weeks that it takes the pressure off of me with regards to creativity on the spot.

[GlutenGalAZ]

Thanks for the encouragement. I'm taking Nature Made Vitamins. They both say Gluten Free. How will I know if that is not true? Shouldn't it have to be gluten-free if it says gluten-free? I've been so careful with everything. That would tick me off. I would love to cut out my Cymbalta and Strattera, but I have such a depression relapse every time I try. It wouldn't be wise to do it in the winter months. (Up in Michigan, it is about to turn to winter).

I'm feeling much better today. For those of you with Gluten eating spouses, what kind of "rules" do they have? I've been trying to educate my hubby. He is trying very hard, but has not internalized the magnitude of the impact of invisible husband crumbs. I really don't think he was the one who glutened me. I think it was my nail biting or the bird.

Thank you for the tip on the epsom salt baths. I tried one several months ago after a massage, and it was wonderful. It must have something to do with the saltwater floating your body a little.

Most of the food I eat is very nutrient dense. I am allowing myself some gluten/salt/cholesterol free corn chips and occasional cans of fruit. Otherwise, I'm all fresh fruit, veggies, meat, rice, potatoes, Bob's Redmill gluten-free hot breakfast, OJ, tea, & nuts, olive oil. I feel so much less gassy after getting rid of the soy. I'll try it again in 6 months with Beano.

Thank you for all the support and answers. This is a good group of folks.

SGWhiskers

In our household it is my husband, me and two dogs. My husband takes care of the dog food.

Since it is just the two of us it is easier for us to have a gluten/gluten free household. We each have our own counter so he makes his gluten things on his counter. We have our own toasters. He does have his own cookie sheet and 2 pans (for soups). Majority of our baking in the oven or cooking on the stove is gluten free so we share all of the cooking spoons etc. We each have our own butter, jam and peanut butter (I lable mine and he likes to put his name on his). In the pantry he has his own shelf for just gluten foods then I have my gluten free foods on the other side of the pantry then we share the rest of the shelves with safe items.

The only flour in our household is gluten free. The only rules we really have is that if we are sharing a bag of say chips you have to put them on a plate or wash your hands before you eat any, clean up any bread crumbs and don't use my gluten free counter for anything gluten related.

The corn chips you eat are they gluten free? Oops I just saw gluten free =) Or shared on the same lines as wheat products? The only chips I eat now are Mission White Corn tortillas. I stopped eating the Lays brand months ago b/c of CC issues.

If you are avoiding dairy right now Pacific makes a non dairy drink called Almond they have plain, vanilla and chocolate flavor -- really good.

I wouldn't second guess the Nature Made Vitamines. Just make sure the ones you get say glute free on them. There are a lot of people on here that use that brand. I use it and haven't had any problems.

Good Luck with everything.

[Mike M]

Thanks for the encouragement. I'm taking Nature Made Vitamins. They both say Gluten Free. How will I know if that is not true? Shouldn't it have to be gluten-free if it says gluten-free? I've been so careful with everything. That would tick me off. I would love to cut out my Cymbalta and Strattera, but I have such a depression relapse every time I try. It wouldn't be wise to do it in the winter months. (Up in Michigan, it is about to turn to winter).

Can you buy the sublingual B12 over the counter? Do they work as well as the shots?

I'm feeling much better today. For those of you with Gluten eating spouses, what kind of "rules" do they have? I've been trying to educate my hubby. He is trying very hard, but has not internalized the magnitude of the impact of invisible husband crumbs. I really don't think he was the one who glutened me. I think it was my nail biting or the bird.

Thank you for the tip on the epsom salt baths. I tried one several months ago after a massage, and it was wonderful. It must have something to do with the saltwater floating your body a little.

Most of the food I eat is very nutrient dense. I am allowing myself some gluten/salt/cholesterol free corn chips and occasional cans of fruit. Otherwise, I'm all fresh fruit, veggies, meat, rice, potatoes, Bob's Redmill gluten-free hot breakfast, OJ, tea, & nuts, olive oil. I feel so much less gassy after getting rid of the soy. I'll try it again in 6 months with Beano.

Thank you for all the support and answers. This is a good group of folks.

SGWhiskers

Hello SGWiskers, If you want, tell me exactly what vitamin you are taking and I will go purchase a bottle and test them for you and give you the results. Hey after all we are all in this togｅther!

[SGWhiskers]

Mike,

That is a VERY nice offer. I've got $30.00 worth of vitamins between the 2 bottles. I'm not going to ask you to spend that much money.

I'm all back to my version of normal today. One good thing came of this. I didn't think I was making much progress. But when I recreated the damage for 3 days, it was obvious how much better I had been feeling. Hubby is worried about the gluten more too.

We have different shelves and labeled foods. We also have a bad habit of eating in any room of the house and he LOVES crushed graham crackers and milk for cereal. I've gotten him to rinse most of his dishes. Maybe I'll make a list of ideas for rules and have him pick ones he thinks he can live with. My hands have gotten so chapped from washing. I'm looking a little OCD.

Shared food processing lines. Ugh. I had not gotten that specific yet. The chips just had 3 safe ingredients and I was happy. They didn't make me feel bad, so I hope that means no worrisome CC.

25 years of trying to quit nail biting, and I think I've finally found the motivation.

Thanks for all of your support.

SGWhiskers

[ShayFL]

I go by two things when trying to determine if a supplement is gluten-free. One is what they say about their gluten-free status and the other is my reaction to the supplement. If I get gluten, I get vertigo and migraine. There is no mistaking.

I do not/have not reacted to Country Life or Pure Encapsulation. I really like Pure Encapsulation the most, but they are pricey. I like that they dont have all of those toxic fillers. Country Life is gluten-free, but does use the fillers.

So, yes, Mike, I am pretty comfortable with those two brands. Am I 100% sure? Nothing in this world is...............me.....you.....this forum......could all be an illusion.

[Mike M]

Mike,

That is a VERY nice offer. I've got $30.00 worth of vitamins between the 2 bottles. I'm not going to ask you to spend that much money.

I'm all back to my version of normal today. One good thing came of this. I didn't think I was making much progress. But when I recreated the damage for 3 days, it was obvious how much better I had been feeling. Hubby is worried about the gluten more too.

We have different shelves and labeled foods. We also have a bad habit of eating in any room of the house and he LOVES crushed graham crackers and milk for cereal. I've gotten him to rinse most of his dishes. Maybe I'll make a list of ideas for rules and have him pick ones he thinks he can live with. My hands have gotten so chapped from washing. I'm looking a little OCD.

Shared food processing lines. Ugh. I had not gotten that specific yet. The chips just had 3 safe ingredients and I was happy. They didn't make me feel bad, so I hope that means no worrisome CC.

25 years of trying to quit nail biting, and I think I've finally found the motivation.

Thanks for all of your support.

SGWhiskers

HELLO SGWHISKERS, glad to hear you are doing better. This deal is tough to say the least. I did great the first few months and then started going backwards pretty quick. realized I was getting gluten from labeled gluten free foods and vitamins, I was shocked by this. I am hyper sensitive, can't even go into a store with an active bakery, flour in the air deal, gets in my mouth/throat and eventually gets rinsed down and the reaction begins. Mine lasts at least 5 days or more, it is awful as you know. I thought there must be a way to check for gluten, someone must have a way,sure enough there is a company that makes a home kit. It has been a life saver to me. I can't imagine the trial and error that folks had to go through in the past. My hat goes off to all of them. Offer still stands if you ever change your mind! All the best, Mike

[Mike M]

I go by two things when trying to determine if a supplement is gluten-free. One is what they say about their gluten-free status and the other is my reaction to the supplement. If I get gluten, I get vertigo and migraine. There is no mistaking.

I do not/have not reacted to Country Life or Pure Encapsulation. I really like Pure Encapsulation the most, but they are pricey. I like that they dont have all of those toxic fillers. Country Life is gluten-free, but does use the fillers.

So, yes, Mike, I am pretty comfortable with those two brands. Am I 100% sure? Nothing in this world is...............me.....you.....this forum......could all be an illusion.

Hello ShayFl, gosh, I sure don't want to get into flaming a companies product. I will tell you I tested a multi vitamin that was in your post and it was positive. It was one of the first gluten free vitamins that I purchased.Said right on th bottle, Gluten Free........

[utahlaura]

I've been gluten-free for 7 weeks. My symptoms have been mostly neurologic. There were really no digestive changes when I went gluten-free. I still feel horrible, but there have been a few baby steps towards progress. (Getting off NSAIDS). Saturday morning, I woke up feeling relatively clear headed. I had my gluten-free tea, plain walnuts, gluten-free rice chex, and DAILY meds (gluten-free vitamins, Strattera, and Cymbalta [EliLily will only confirm no wheat]). Within the hour, I started feeling my old headache, tension, buzzing, lethargy. That has continued for 48 hours. Then today, I got my version of soft stool with tiny bits of food. It was moderately painful, but brief. The neurologic relapse is feeling a bit better today. Canker sores are appearing. I'm thinking the most likely sources of gluten were invisible flying husband crumbs, invisible flying birdseed (gluten-free on special order), or my momentary relapse into nail biting).

At this point in my treatment, I have several questions for all of you.

1) Does this sound like any of you when you get glutened (especially the 48 hour delay in digestive symptoms)?

2) If I did gluten myself, does that mean I had been successful at being gluten-free?

3) If the most I can say after 7 weeks of gluten-free is that I'm off NSAIDS, can climb stairs a little easier, and walk a little faster, shouldn't I be asking for more? (I'd say I'm 4% better) My 2 month appt is coming up and I'm thinking about discussing the following with my rhumatologist:

* vitamin testing/injections

* investigating additional autoimmune diseases

* wondering about refractory (I don't want to think it, but I've had so little progress and all the incomplete diagnosis along the way make me on my guard for a better explaination).

4) When is the earliest I can get my first gluten-free bloodwork done accurately? I'm tissue transglutiminase IgG negative. Everything else was moderate to strong positive.

As far as my gluten-free attempts go, I'm eating almost all whole foods, stopped most beans/soy last week, kept old unscratched expensive teflon, DH still has gluten, no gluten baking for me, prerinse gluten plates for dishwasher, called company on all prepared foods (or lablel says gluten-free), no restaraunts, no makeup, Suave shampoo, B&Bworks shower gel (no obvious gluten), dishwash can opener, crest toothpaste.

Thanks for any opinions, personal experiences, and web links you can share.

SGWhiskers

The first couple of healing months for me have been absolutely awful! I of course react to gluten, but aslo to so many foods that are non gluten. Trouble with fats ( dietician ays that's common) lactose intolerant. The only grain I can tolerate at all is buckwheat ( not really a grain but a flower) Natural and artificial flavorings absolutely throw me down! No fruits yet or anything sour ( like a dry wine too) I worry aout my fat soluable vitamins because I'm getting very little fat and my energy level id low cause I can't take any startchy or sweet carbs like beans or rice or fruit. Even potatoes are still off limits.

I like to say I get my variety having fish and vegetables one day and then vegetables and fish the next. lol Yeah this is a tough time for me, but yesterday I was able to tolerate 8 oz of fat free milk! Yay! And even though I can't tolerate chicken, I discovered I can have pork ( of all things) if it's boiled clean of too much fat and in small amounts. I can also drink tea again too! Nothing flavored, though.

So I'm getting better and smarter and more patient. Patient especially has been a biggie with me. Not trying to eat all foods that are non-gluten too fast. Wierd that we have all these other food reactions at the beginning of the damage manifesting itself. I was SOOO discouraged and always sick for a while. But at the very beginning I was actually doing the IV food bag clinic cause I couldn't tolerate a bite of anything. Hideous! Thank God that part is over at least!

[Mike M]

The first couple of healing months for me have been absolutely awful! I of course react to gluten, but aslo to so many foods that are non gluten. Trouble with fats ( dietician ays that's common) lactose intolerant. The only grain I can tolerate at all is buckwheat ( not really a grain but a flower) Natural and artificial flavorings absolutely throw me down! No fruits yet or anything sour ( like a dry wine too) I worry aout my fat soluable vitamins because I'm getting very little fat and my energy level id low cause I can't take any startchy or sweet carbs like beans or rice or fruit. Even potatoes are still off limits.

I like to say I get my variety having fish and vegetables one day and then vegetables and fish the next. lol Yeah this is a tough time for me, but yesterday I was able to tolerate 8 oz of fat free milk! Yay! And even though I can't tolerate chicken, I discovered I can have pork ( of all things) if it's boiled clean of too much fat and in small amounts. I can also drink tea again too! Nothing flavored, though.

So I'm getting better and smarter and more patient. Patient especially has been a biggie with me. Not trying to eat all foods that are non-gluten too fast. Wierd that we have all these other food reactions at the beginning of the damage manifesting itself. I was SOOO discouraged and always sick for a while. But at the very beginning I was actually doing the IV food bag clinic cause I couldn't tolerate a bite of anything. Hideous! Thank God that part is over at least!

Hi UtahLuara! I wanted to add that my first few months went well only because I ate chicken and rice and rice and chicken the next day.He He......If I tried to add a banana look out! Seems like it was too much sugar. Same deal with me (didn't do the IV) might have if I had known about it!

It is an inching process for sure! I have almost entire food groups that I still cannot eat (legumes). It seems like if this celiac was a sport.......There should be a technical foul called immediately!!! All the best Mike

[SGWhiskers]

Goodness,

Some of you have had to cut out so much. I'd say I'm fairly luck in that I don't have the digestive problems most of the time. It is nice to hear what you could and couldn't tolerate becaues it gives some validity to some of the vague sensations I have after I eat something I know is gluten-free. It kind of explains why I feel like I can't handle certain foods yet. Mostly things with really high sugar or legumes/soy.

Mike, Thank you again for the offer. I have little doubt that some of the gluten-free food/vitamins out there are cross contaminated and therefore tainted. I'm trusting that most of it is safe, but sticking mostly to naturally gluten-free foods until I heal up more and can tell the difference by my reaction. Where did you get your test kits? I saw some online, but they were really expensive.

I'm so glad this forum is here for us to learn from each other.