New To Gluten Free With Some Questions!

[AmyT]

I have been following these forums since the January 8,2010 and they have been very helpful!! I would like to share my story and I have a few questions as well, I would love the help, thanks!

I am a 40yo female, married with 2 kids...Beginning in Nov 09 (right about my 40th bday!), I got a sinus infection (always sick, spring and fall with sinusitis). I was prescribed Omnicef, which worked pretty awesome, felt great on the 2nd day. However, after the last day of taking them (day before Thanksgiving) I felt definitely off. That weekend I started to get really bad cracks on the corners of my mouth. I went to the Dr. for those and he said it was Chelitis from yeast. So he prescribed one Diflucan, that made me feel worse, and I actually think it gave me a vaginal yeast infection which I didn't have before! I was miserable and feeling terrible at this point. He told me to up my Vitamin B12, and B6. I already supplement a lot and he just said "I don't know too much about nutrition but just increase it." So I did. The cracks never went away for about 2 weeks and then they became really awful and became a staph infection! I could barely open my mouth, it was so sore, my tongue and cheeks were actually swollen. All during this time I was laying off the wheat products for fear of yeast, and I was starting to feel a bit better. I was prescribed a strong antibiotic for my mouth and it got quite a bit better.

Then Christmas came, I felt pretty good, so I started living my life normally as before thinking everything was all set. Then the whole week after Christmas and New Years came and I was exhausted! I was so fatigued and brain fog was definitely setting in.

Over New Years break, a few articles and web blogs came into my life. One that really struck me was this:

Open Original Shared Link

And also my husband is an avid cyclist and runner and has been following athletes who have gone off gluten for performance reasons. As a sports minded, nutritionally sound family, I was curious and intrigued. Also my husbands close cousin has been celiac for 10 years. We are fairly knowledgeable about it but always thought it was an all or nothing disease, autoimmune and genetic causes.

I thought what the heck, I could have some gluten sensitivities because of most of the things above but I have had many other symptoms of gluten sensitivities my whole life, and they were become ever increasing of the last few years, and really consistent since November.

So on January 6,2010 I have been gluten free and I feel amazing!!!! I can't believe it! I have never felt better and I am telling everyone I know. Now I also see the effects of gluten sensitivity in my children, daughter 11yo, and son 9yo, and their results are amazing as well. My hubby is also sensitive too, but is really trying to wean himself off slowly but over time and seeing me feel so great he is more open minded to going totally gluten-free. His big issue is making bread and home made beer. His is going to make gluten-free home brew soon!

However, after going gluten-free on Jan 6, I got the cracks on my mouth again, ugh. I went to my primary care physician and told him what I discovered about going gluten-free and my other symptoms related gluten/celiac. He was skeptical but told me if it feels better do it. I also had a blood test for B6 which was normal, B12 which was normal and the anti transglutamase antibodies (ttg) which was a 3 after being of gluten for a week.

I won't share all the details of my symptoms because I have had a bit of everything on and off and I was never consistent enough to think I had a problem. I just thought that it was how my normal was or "just something I ate!" Now that I look back it is the source off many problems not only with me but my children, my mother (colon cancer at 54yo) aunt (IBS this fall with no definite diagnosis from dr.s) my grandmother (many bowel issuse, and colon cancer at 88yo, lived to be 94yo, she was super vigilant about her diet, so I know she new something about what she ate didn't make her feel well). So now I am trying to convince others to get off the gluten!!

Sorry for being so long, I just wanted to share! So I have a couple of questions.

I am also sensitive to milk/casein, I love milk!!! I am going to give it 4-6 months. Will that improve and what have people experienced with that?

Should I see a nutritionist? GI doc? I am following my nutrition on Nutrimirror.com and I am very educated in nutrition etc, but is there something more I need to know? I don't really care if I have a Celiac diagnosis at this point. I am off gluten and feel great and that is good enough for me.

Also, even though the TTG was 3 which is a negative report, doesn't that mean that there is a gluten sensitivity of course, maybe celiac? Does the body produce an antibody for no reason? I have a biology degree and I don't believe the body would produce bee sting anti bodies if one hasn't been stung by a bee. The body is much too smart and efficient to do that. I could be wrong but that seems to make sense to me.

Other than that, I am going to keep following this forum and I will hopefully be as supportive as everyone else has been, thanks!

[RiceGuy]

Welcome to the board! So glad you've discovered what has been making you so ill, and what to do about it.

About the cracks in the corners of the mouth; I have noticed this once in a while, and it seems related to when I ingest unusually high amounts of vitamin C. I've read that deficiencies of vitamin B2, zinc and iron have been related to it also. Perhaps others will have more information on that.

I've read that vitamin B12 deficiency cannot be reliably measured, because the body robs tissues and organs of B12 in order to keep the level up in the blood. But since there is no level of overdose for B12, you can safely take a supplement without any risk of overdose. I always recommend a methylcobalamin sublingual tablet form, such as the one made by Source Naturals. In fact, I'd suggest a co-enzyme B-complex as well, if you're not already taking one. If you don't have a decent multivitamin, it probably can't hurt to add that to your daily supplementation too.

As for dairy, it sure does give many people problems. There are a number of things which you can use instead, including rice milk (avoid Rice Dream - it has gluten), almond milk, coconut milk, soy milk, and others. You can use coconut oil in place of butter/margarine/shortening, as it is solid at room temperature, and melts above 76°F. It's great for cooking and baking. Some find that they can eventually add some dairy back into their diets, while other cannot.

I would tend to agree with you about the production of antibodies, though the medical community seems to think that a certain amount is "normal". I suspect it may be one reason for so many auto-immune and systemic health problems these days. I think all the chemicals used everywhere are taking their toll, the toxic load on the body is going ever higher, and we're becoming overloaded by everything. Add in the chronic nutritional deficiencies most of us have, and it's just going to get worse.

I'm not sure about your other questions, but I am certain that there are members here who are able to address them.

[AmyT]

Thanks Rice Guy! This forum is sooo helpful! I have finally found my people! I can not believe how I can relate to most everyone's stories. I feel so much better now and I can't help but tell everyone around, I am probably very annoying now:) However, it is getting so common when I do bring it up, people know someone who has Celiac.

I am doing well on my new gluten-free lifestyle but I did get glutenated a few days ago and I felt awful, so I am constantly trying to get as far away from gluten as possible because it sucks!

Thanks for your info, it is helpful to gain every little ounce of knowledge. It it really exciting to learn new things, this is all a little overwhelming but soooo worth it! Thanks!

[psawyer]

Regarding the tTg, no test is perfect. While the test is quite specific, a low value does not necessarily mean that antibodies are present, just that the test is not 100% specific and accurate. Even with no antibodies present, some reaction is normal.

[T.H.]

The one thing I would do is make sure you find a very, very celiac knowledgable doctor. If you have the cash, they can give you the prometheus test (blood test) to see if you have the gene for celiac. That combined with your symptoms might make a believer out of your doc.

However...the reason I say you should get a knowledgable doc?

- if you have been diagnosed as an adult, your body may have some severe vitamin deficiencies at this point, including osteoporosis. It's very common in adult-diagnosed celiacs.

-On top of that, it CAN take up to 2 years for an adult to heal completely, depending on how badly their insides are damaged. During this time, you may not be absorbing vitamins and minerals, etc... properly. My GI was saying that as an example, for some people, he would have to give them 50 times the normal amount of a vitamin for them to absorb a daily dose. Obviously, that's not safe to do when you haven't tested your levels, and you don't have ongoing tests for your vitamin levels. Also...sometimes adult-diagnosed celiacs will never heal completely and there may be some vitamins that they will always need to get supplements for.

- When your gut hasn't healed, you also absorb medicines differently - you need a doc. that is aware of this.

- when you have celiac, you have a greater chance of having other food issues and other auto-immune disorders (hypothyroidism, diabetes I, rheumatoid arthritis, and hashimoto's disease are the ones I know off-hand). If your doc. is not looking for this, that won't help you in the long run. A rotation diet can really help prevent developing future allergies to foods, too.

- on the same gene as celiac disease is something that causes minor heart defects. A large number of celiac folk have these. Usually not a problem, but some can be, so it's important to be aware, is all.

So...I don't know that you want a GI, because they almost always want you to start gluten again, and you'd have to find a really good celiac one. However, I think you really need to see if you canfind a celiac knowledgable doc.

That said...for help with the family and testing? Statistically...

If you have celiac disease, people with 1 degree of separation (child, sibling, parent) have a 1 in 22 chance of having it too.

If you have celiac disease, people related but not so close (cousins, aunts, grandparents) have a 1 in 56 chance of having it too.

Don't know if that will help with persuading the family, but I'm glad I check on it for ours! On my side of the family, out of the people who've tested? 4 out of the 5 tested positive.

I have been following these forums since the January 8,2010 and they have been very helpful!! I would like to share my story and I have a few questions as well, I would love the help, thanks!

I am a 40yo female, married with 2 kids...Beginning in Nov 09 (right about my 40th bday!), I got a sinus infection (always sick, spring and fall with sinusitis). I was prescribed Omnicef, which worked pretty awesome, felt great on the 2nd day. However, after the last day of taking them (day before Thanksgiving) I felt definitely off. That weekend I started to get really bad cracks on the corners of my mouth. I went to the Dr. for those and he said it was Chelitis from yeast. So he prescribed one Diflucan, that made me feel worse, and I actually think it gave me a vaginal yeast infection which I didn't have before! I was miserable and feeling terrible at this point. He told me to up my Vitamin B12, and B6. I already supplement a lot and he just said "I don't know too much about nutrition but just increase it." So I did. The cracks never went away for about 2 weeks and then they became really awful and became a staph infection! I could barely open my mouth, it was so sore, my tongue and cheeks were actually swollen. All during this time I was laying off the wheat products for fear of yeast, and I was starting to feel a bit better. I was prescribed a strong antibiotic for my mouth and it got quite a bit better.

Then Christmas came, I felt pretty good, so I started living my life normally as before thinking everything was all set. Then the whole week after Christmas and New Years came and I was exhausted! I was so fatigued and brain fog was definitely setting in.

Over New Years break, a few articles and web blogs came into my life. One that really struck me was this:

Open Original Shared Link

And also my husband is an avid cyclist and runner and has been following athletes who have gone off gluten for performance reasons. As a sports minded, nutritionally sound family, I was curious and intrigued. Also my husbands close cousin has been celiac for 10 years. We are fairly knowledgeable about it but always thought it was an all or nothing disease, autoimmune and genetic causes.

I thought what the heck, I could have some gluten sensitivities because of most of the things above but I have had many other symptoms of gluten sensitivities my whole life, and they were become ever increasing of the last few years, and really consistent since November.

So on January 6,2010 I have been gluten free and I feel amazing!!!! I can't believe it! I have never felt better and I am telling everyone I know. Now I also see the effects of gluten sensitivity in my children, daughter 11yo, and son 9yo, and their results are amazing as well. My hubby is also sensitive too, but is really trying to wean himself off slowly but over time and seeing me feel so great he is more open minded to going totally gluten-free. His big issue is making bread and home made beer. His is going to make gluten-free home brew soon!

However, after going gluten-free on Jan 6, I got the cracks on my mouth again, ugh. I went to my primary care physician and told him what I discovered about going gluten-free and my other symptoms related gluten/celiac. He was skeptical but told me if it feels better do it. I also had a blood test for B6 which was normal, B12 which was normal and the anti transglutamase antibodies (ttg) which was a 3 after being of gluten for a week.

I won't share all the details of my symptoms because I have had a bit of everything on and off and I was never consistent enough to think I had a problem. I just thought that it was how my normal was or "just something I ate!" Now that I look back it is the source off many problems not only with me but my children, my mother (colon cancer at 54yo) aunt (IBS this fall with no definite diagnosis from dr.s) my grandmother (many bowel issuse, and colon cancer at 88yo, lived to be 94yo, she was super vigilant about her diet, so I know she new something about what she ate didn't make her feel well). So now I am trying to convince others to get off the gluten!!

Sorry for being so long, I just wanted to share! So I have a couple of questions.

I am also sensitive to milk/casein, I love milk!!! I am going to give it 4-6 months. Will that improve and what have people experienced with that?

Should I see a nutritionist? GI doc? I am following my nutrition on Nutrimirror.com and I am very educated in nutrition etc, but is there something more I need to know? I don't really care if I have a Celiac diagnosis at this point. I am off gluten and feel great and that is good enough for me.

Also, even though the TTG was 3 which is a negative report, doesn't that mean that there is a gluten sensitivity of course, maybe celiac? Does the body produce an antibody for no reason? I have a biology degree and I don't believe the body would produce bee sting anti bodies if one hasn't been stung by a bee. The body is much too smart and efficient to do that. I could be wrong but that seems to make sense to me.

Other than that, I am going to keep following this forum and I will hopefully be as supportive as everyone else has been, thanks!