So Upset, Need Help With Vertigo

[cbear6301]

I went gluten-free in April of this year so its been about 6 months. I was feeling on top of the world with most symptoms resolving. I suffer from terrible migraines and vertigo, usually together.

In the last 2 weeks, I have been so very dizzy and I can't find the culprit in my diet. I know on 9-26, I got glutened at my moms house but have tried to be strict since then. I have had some additional stressors in my life with my job, finances, teenagers, etc but I think its the gluten. Today I woke up with the room spinning and a migraine- I had to take my imitrex, I feel so awful. Yesterday I was stuttering at work and very sluggish.. This afternoon my stomach is very upset and I keep having to go...so I am not sure what I am doing wrong. I have high levels of sensitivity to gluten but I just can't pinpoint it. I tend to eat the same thing every day and I can't find the gluten.

For breakfast - bakery on main granola and milk. sometimes sam's choice coffee with international delights creamer

for lunch- either leftovers, or deli fresh oscar meyer lunch meat, cheese, a yoplait delight and some mm's

for dinner- usually just meat and potato, fresh veggie

snack- usually doritos or lays chips, popcorn and some mm's.

Everything has been checked and I can't find it. Could it be my toothpaste (colgate) or my shampoo ( suave ), my makeup ( mary kay but no lipstick)

I have used most of these since April so why am I gettting sick now. The only additional thing I have been eating is tootsie rolls at work.

Can anyone help me? Anyone with vertigo have it suddenly come back???

Thank you for any advice.

[jerseyangel]

If these are all typical gluten reactions for you, I'm thinking that possibly you are becoming more sensitive to trace amounts of gluten as time goes on. It happens--it happened to me......

I would start by looking at the processed foods like Bakery on Main--delicious but made on shared lines. Also, the Lay's products. They were fine for me at first, but then became hit or miss at best. They are also made on shared lines (except the Staxx) and several here react to them.

Also check the ingredients of your shampoo and makeup--Colgate is fine.

My best advice would be to cut out all the processed foods until you feel better and then add things back slowly one at a time. A simple food journal is very useful for this--it can help you begin to see a pattern.

[Fiddle-Faddle]

Vertigo can be a symptom of B12-deficiency, especially if there is a history of migraines, which can also be caused by B1 deficiency. Celiacs are at high risk for B12 deficiency due to malabsorption, and so are those who take Prilosec and other acid blockers (which you didn't mention it, I'm just adding the info for anyone reading along).

Neuro-otologists theorize that there is a "migraine of the ear" that affects the inner ear, which is responsible for balance. However, they aren't quick to offer theories of what causes the migraine--they just offer meds like Imitrex (which do help enormously, but don't necessarily address the cause).

As far as your diet is concerned, some flavors of Doritos do contain gluten, such as the Nacho cheese flavors. I'm not sure about Lay's. However, many flavors of both brands contain maltodextrin, which has been a topic of controversy on this board. Many people here were convinced that it must contain gluten, as they noticed their gluten-specific reactions occurring with it.

As far as anyone can tell, maltodextrin is not derived from wheat ingredients and ought to be perfectly safe for celiacs.

My own theory is that some celiacs are also super-sensitive to maltodextrin, for unknown reasons. Personally, I don't have strong reactions to small amounts of gluten (even so, I NEVER cheat), and I DO to maltodextrin. So you might wish to avoid products with maltodextrin for a while and see if that's the culprit.

Fritos and Tostitos contain only corn, oil, and salt, and might be better choices. If they seem flavorless, you can always pair them with a nice mango salsa!

[ajsmom514]

My mom has the same problems... the migraines and severe vertigo. Last year, she was diagnosed with Meniere's Disease. She's on a strict low sodium, no caffeine diet and her "attacks" are less frequent. Here's a link for a bit more info...

Open Original Shared Link

Hope that your symptoms resolve soon!

Gina

[Frances03]

I called Colgate TODAY and was told they can't guarantee ANY of their products are gluten-free because they are manufactured all over the place in different facilities, and they have no idea about what might happen during the manufacturing process, tho they don't add gluten to anything. So I'm giving up my toothpaste, and probably my much loved Palmolive. I read on this post someone said Colgate was fine, and it might be fine if you are gluten intolerant, but if you are diagnosed with celiac disease, you might want to eliminate any possibility of cross contamination. I think I would question the doritos and lays too, tho I haven't called them yet. I do know the Lays Stax are made on gluten free lines so those should be safe. As for Suave, that is also another company I just called and they cannot guarantee anything and dont test for it. I changed to Garnier Fructis which is gluten free. I know Tootsie has no gluten in anything they make, no idea about Mary Kay.

I went gluten-free in April of this year so its been about 6 months. I was feeling on top of the world with most symptoms resolving. I suffer from terrible migraines and vertigo, usually together.

In the last 2 weeks, I have been so very dizzy and I can't find the culprit in my diet. I know on 9-26, I got glutened at my moms house but have tried to be strict since then. I have had some additional stressors in my life with my job, finances, teenagers, etc but I think its the gluten. Today I woke up with the room spinning and a migraine- I had to take my imitrex, I feel so awful. Yesterday I was stuttering at work and very sluggish.. This afternoon my stomach is very upset and I keep having to go...so I am not sure what I am doing wrong. I have high levels of sensitivity to gluten but I just can't pinpoint it. I tend to eat the same thing every day and I can't find the gluten.

For breakfast - bakery on main granola and milk. sometimes sam's choice coffee with international delights creamer

for lunch- either leftovers, or deli fresh oscar meyer lunch meat, cheese, a yoplait delight and some mm's

for dinner- usually just meat and potato, fresh veggie

snack- usually doritos or lays chips, popcorn and some mm's.

Everything has been checked and I can't find it. Could it be my toothpaste (colgate) or my shampoo ( suave ), my makeup ( mary kay but no lipstick)

I have used most of these since April so why am I gettting sick now. The only additional thing I have been eating is tootsie rolls at work.

Can anyone help me? Anyone with vertigo have it suddenly come back???

Thank you for any advice.

[jerseyangel]

I called Colgate TODAY and was told they can't guarantee ANY of their products are gluten-free because they are manufactured all over the place in different facilities, and they have no idea about what might happen during the manufacturing process, tho they don't add gluten to anything. So I'm giving up my toothpaste, and probably my much loved Palmolive. I read on this post someone said Colgate was fine, and it might be fine if you are gluten intolerant, but if you are diagnosed with celiac disease, you might want to eliminate any possibility of cross contamination.

No company is going to "guarantee" their products are gluten-free. There is always some degree of risk for cross contamination somewhere along the line. Colgate was simply using a CYA statement--their toothpastes do not contain gluten. I am a diagnosed Celiac--not that it makes a difference since whether we're Celiac or Gluten Intolerant we all need to follow a gluten-free diet.

[Frances03]

I've called quite a few companies that do feel safe saying their products are gluten free because they have no gluten anywhere in their facility. As for Colgate, they told me that they use MANY facilities all over the country and if those facilities also process gluten, then the chance for cross contamination is there. I dont think there is much risk for cross contamination with a company that has no gluten at all in their facility, and I also appreciate a company that tests frequently for gluten, which many companies do. Colgate doesn't do this either. If their toothpastes do not contain gluten, they would be able to say they don't. They can't say that. And imo, it does make a difference if you have biopsy proven celiac disease, or gluten intolerance, in that with celiac disease, your body is actually damaging itself when attacking gluten, and that can lead to cancer among other things, so I dont want to take any chances when there are tons of other options out there for me. I was just sharing what I've learned from calling these companies, and I have no personal affiliation with any company any where.

No company is going to "guarantee" their products are gluten-free. There is always some degree of risk for cross contamination somewhere along the line. Colgate was simply using a CYA statement--their toothpastes do not contain gluten. I am a diagnosed Celiac--not that it makes a difference since whether we're Celiac or Gluten Intolerant we all need to follow a gluten-free diet.

[ang1e0251]

For breakfast - bakery on main granola and milk. sometimes sam's choice coffee with international delights creamer

Double check your creamer, some have gluten.

for lunch- either leftovers, or deli fresh oscar meyer lunch meat, cheese, a yoplait delight and some mm's

I can only tolerate the Hormel Naturals lunchmeat. In the beginning, I didn't have a problem with any but later the ham was bothering me so I switched and do well with that brand.

for dinner- usually just meat and potato, fresh veggie

Looks good!

snack- usually doritos or lays chips, popcorn and some mm's.

I'm one of those who have a problem with Lays. I can eat them 9 times and be OK but the 10th time I might react. The last time that happened I just said that's it, no more Lays.

I have used most of these since April so why am I gettting sick now. The only additional thing I have been eating is tootsie rolls at work.

You can just get more sensitive over time. I did, things I tolerated in the start of my diet,I no longer can. And I also showed problems with other foods over time. That is pretty common with person's with celiac disease.

Can anyone help me? Anyone with vertigo have it suddenly come back???

I don't have vertigo but I did have joint pain that reocurred when I found a new sensitivity.

[Fiddle-Faddle]

Caffeine and salt are both considered to be vertigo triggers. You might look up some forums on Meniere's Disease to get more ideas. I'm not saying you have Meniere's Disease. In fact, it's not a real disease, it's a SYNDROME (a collection of symptoms, with crippling vertigo being the primary symptom). Many deli meats also contain sodium nitrite, which is something my whole family reacts to.

Quitting caffeine can actually make things worse if you do it cold turkey. Can you switch to something like green tea, and start with as many cups as it takes to equal the amount of caffeine you are used to, and then taper down?

There is also a supplement protocol developed by a biologist in Ohio, that seems to have much more success than anything the doctors come up with (like prednisone shots in the ear). You might check it out and see if any of it looks like it might be helpful to you: Open Original Shared Link

[BRUMI1968]

I'm so sorry to hear about your vertigo. I woke up with insane vertigo a year ago or so - they think it is the kind that is caused when a little "rock" in your ear gets misplaced. But I did go get my ears checked. They asked some questions and looked at my eyes and whanot.

If it is indeed VERTIGO (as opposed to dizziness), I would get it checked out. The kind I have is supposedly fixable through some head exercises that a Physical Therapist does with you (I've never been having symptoms when I could afford to go); Menieres is another, and there are a couple more causes as well...some of them have cures; all of them have coping techniques.

I would also rule out B12 deficiency, and you need to check homosystein (sp?) levels as well - you can have low B12 but test out not low - and so you need to double check that one.

If you can afford it or have isurance, get the vertigo checked out. It may have nothing at all to do with celiac disease - it is actually quite common, especially for women, to have at least once in their lives. (I've had bouts about 4 times - and it changes your life to feel that insecure in the world, that is for sure.)

[cbear6301]

thank you ..i am taking all of your advice. I know I have true vertigo because of the countless tests and doctors who have all diagnosed it. It just that it all went away and its odd that its back. I have reevaluated my diet and personal body products.. I found wheat in my shampoo and my daughter's shampoo.. I really didn't even think to check there.

I am still sick. Today I have a migraine coming on .. and my whole body hurts..that drying off with a towel put me in tears. I hurt. I am truly at a loss. I have eliminated everything that I can think of, and as for the coffee.. I only drink maybe 3 a week and its decaf. I have spent the morning crying. I just want to feel like I have been feeling.

But thank you for all your advice... I am looking into all of it...

christine

[Gemini]

I've called quite a few companies that do feel safe saying their products are gluten free because they have no gluten anywhere in their facility. As for Colgate, they told me that they use MANY facilities all over the country and if those facilities also process gluten, then the chance for cross contamination is there. I dont think there is much risk for cross contamination with a company that has no gluten at all in their facility, and I also appreciate a company that tests frequently for gluten, which many companies do. Colgate doesn't do this either. If their toothpastes do not contain gluten, they would be able to say they don't. They can't say that. And imo, it does make a difference if you have biopsy proven celiac disease, or gluten intolerance, in that with celiac disease, your body is actually damaging itself when attacking gluten, and that can lead to cancer among other things, so I dont want to take any chances when there are tons of other options out there for me. I was just sharing what I've learned from calling these companies, and I have no personal affiliation with any company any where.

Gluten intolerance IS Celiac disease and it doesn't make any difference if you are a biopsy diagnosed Celiac or a self diagnosed gluten sensitive person...you cannot have gluten. The medical community does not recognize gluten sensitivity, only Celiac disease, so we won't know for many years to come whether villi damage occurs in GS patients as well. Studies are needed to prove it.

As a newly diagnosed Celiac, one of the things you have to learn is how far you are going to take the diet and what your anxiety levels are in regards to how you look at your lifestyle as a gluten-free person. I am a diagnosed Celiac, ultra sensitive who was on the verge of having a feeding tube put in. So, for me, any ingested gluten will be felt and paid for. However, I also have a good outlook on the lifestyle, expected to recover well and was bound and determined not to let Celiac Disease control my life. I control the disease. I also am super serio-sensitive, which means any ingested gluten will register on my blood work. What I found was quite surprising.

The statement given by Colgate was the common answer given by any company trying to keep from being sued. No company can absolutely insure that their product is totally gluten-free, except if produced in a gluten-free facility. Even then, if you want to take it a step further, any product they use to manufacture their product, if it comes from an outside vendor, is suspect. It can keep on snowballing into the ridiculous realm. I have found that some products, manufactured on shared lines that are cleaned in between runs, are perfectly safe. No spikes in blood work and no symptoms for me. I have used Colgate toothpastes with zero problems.

Many, many ultra sensitive Celiacs have found this to be true also and don't walk around thinking if they don't buy exclusively from gluten-free companies, they will end up with cancer. That's just plain ridiculous and not a healthy way to operate. There has to be balance and also the realization that if you do react, it may not be from a gluten hit. I found out having dental work done that I am also sensitive to some gums that are commonly used as binders in dentistry. They gave me the same symptoms as a bad glutening but it definitely wasn't from gluten. It wasn't a CC problem either.....it was the gums.

You can take this diet as far as you want but if you start to worry about everything you put in your mouth and whether or not it is absolutely 100% gluten-free, you are going to have a very hard time with being a Celiac. I never cheat, and am extremely careful but I do not screen my personal products, except anything which goes on the lips, for gluten as gluten cannot be absorbed through the skin. I also eat from some shared line companies and occasionally go out to eat, like anyone else. Yet my blood work is excellent, my symptoms are gone and I am a lot healthier than I was 5 years ago. I do not have any anxiety about this lifestyle, do not expect or worry about getting cancer and it has not been as hard of a road back to health as I originally thought. You have to keep things in perspective.

[jerseyangel]

The statement given by Colgate was the common answer given by any company trying to keep from being sued. No company can absolutely insure that their product is totally gluten-free, except if produced in a gluten-free facility. Even then, if you want to take it a step further, any product they use to manufacture their product, if it comes from an outside vendor, is suspect.

Exactly. A phone rep from a company can declare a product "gluten-free", meaning there are no gluten ingredients added but presently there is no actual legal description of "gluten-free". If pressed further, they would never guarantee that their product was completely safe--there are just to many variables. That said, I've used Colgate (I switch between that and Crest) with absolutely no problems.

We all have to find the levels at which we are most comfortable. It depends on the individual--there are just no "absolutes" here--I'm very sensitive and choose to use very few processed products. I also choose to use personal care products that do not contain gluten, and for that matter that also do not contain tons of chemicals. I determined the few processed (mainstream) foods I do tolerate by trial and error. My follow up blood tests and endoscopy were perfect--it's the unpleasant symptoms from the accidental traces of gluten that my system picks up on that I strive to avoid.

As far as only Celiacs having to be concerned with villi damage--it was only a few years ago that it was thought that Celiac only affected one in 2500 people. There is still a lot to learn about the whole spectrum of gluten sensitivity.

I hesitated to respond before since we are straying from the original topic here--if anyone wants to, we can start a new thread.

[cbear6301]

Looks like the B12 might be it.. I am still in much pain with my body aches and dizziness is still there.. but preliminaries show b12 deficiency and low protein. Tomorrow I go in for an evaluation of my blood work. I hope to have more answers tomorrow...

thank you.

[Swimmr]

If these are all typical gluten reactions for you, I'm thinking that possibly you are becoming more sensitive to trace amounts of gluten as time goes on. It happens--it happened to me......

I would start by looking at the processed foods like Bakery on Main--delicious but made on shared lines. Also, the Lay's products. They were fine for me at first, but then became hit or miss at best. They are also made on shared lines (except the Staxx) and several here react to them.

Also check the ingredients of your shampoo and makeup--Colgate is fine.

My best advice would be to cut out all the processed foods until you feel better and then add things back slowly one at a time. A simple food journal is very useful for this--it can help you begin to see a pattern.

My mother first self diagnosed herself after having some awful rash come up (dh) and went to three dermatologists before one said, "You might have Celiac." The first two docs told her she had scabes. Which in fact she did NOT.

She is HIGHLY sensitive to ANY contamination what-so-ever. But she can eat Bojangles fried chicken. She thinks it's because its deep fried to the point that it kills the protein.

Of course I don't suggest going to get some fried chicken.

I'm just saying that I think the longer you go without being gluten free, the more sensitive you are.

As for me, it takes a few days for dh. Bloating and gas/D/Constipation/irritability etc take several hours.