Go Gluten Free Without Formal Testing?

[Feyliza]

I have been dizzy for THREE years. I usually feel like I am on a boat and the ground is tilting back and forth. Recently I have been getting frequent episodes of spinning dizziness with the usual tilting. Ack! The docs have done MRI's and inner ear tests, blood tests... the works. Now my doctor is recommending that I try going gluten free to see if it is Celiac Disease. I didn't test positive with it in the blood test.

My question is do I try this without a diagnosis. I can't wrap my head around such a major change on a doctor's whim.

I have always had "stomach problems". I have been diagnosed with the blanket term of Irritable Bowel Syndrome. I'm lactose intolerant. I know that these can be symptoms. I'm used to these because I've had them for sooooo long. I just want to find a way to get rid of the dizziness.

Would you (have you) insisted on the formal diagnosis or do you find that after being gluten free you have your answers? I just don't know what to do and I have no idea what I should do.

[mushroom]

I have been dizzy for THREE years. I usually feel like I am on a boat and the ground is tilting back and forth. Recently I have been getting frequent episodes of spinning dizziness with the usual tilting. Ack! The docs have done MRI's and inner ear tests, blood tests... the works. Now my doctor is recommending that I try going gluten free to see if it is Celiac Disease. I didn't test positive with it in the blood test.

My question is do I try this without a diagnosis. I can't wrap my head around such a major change on a doctor's whim.

I have always had "stomach problems". I have been diagnosed with the blanket term of Irritable Bowel Syndrome. I'm lactose intolerant. I know that these can be symptoms. I'm used to these because I've had them for sooooo long. I just want to find a way to get rid of the dizziness.

Would you (have you) insisted on the formal diagnosis or do you find that after being gluten free you have your answers? I just don't know what to do and I have no idea what I should do.

I was also a lactose intolerant "irritable bowel syndrome" person, with gas, bloating, diarrhea among my major symptoms.

Many on here have had the neurological symptoms, including migraine and vertigo, and a I had a prolonged bout of vertigo at one stage for which no cause was found and no treatment was effective. It resolved on its own.

Be aware that the blood tests throw up many false negatives, and even the endoscopic biopsy is often negative in those who, if not actually celiac, are certainly lactose intolerant. So I would think your doctor suspects you might be one of these, and wants to see if a gluten free diet makes a difference for you. A positive response to the diet in and of itself is diagnostic. So I would not exactly call it your doctor's whim.

I had no testing done (was not even aware of it); just decided to stop eating gluten because I knew that a gluten-free diet was used for treating a form of arthritis called ankylosing spondylitis, and I figured that it might help my psoriatic arthritis. Unfortunately, it hasn't, but it sure got rid of my gassy bloatedness and diarrhea.

Many on the forum have gone gluten free without an official diagnosis. A few have found that gluten was not their problem, but hey, if you find that out, that is one more answer to the puzzle. You do have to give it a fair test though (I would say a good month), and be very scrupulous about eliminating the smallest amount of gluten. If you have not noticed any difference by then, then maybe gluten is not the problem; however, healing is an individual process in each person and for some it takes longer.

Ultimately the decision is up to you to decide whether to go gluten free. But if you are sensitive, the longer you continue to consume it the more damage you do to your body. Speaking as one who was not (self)-diagnosed until 67, there is much major damage that cannot now be undone. But if you get it early enough the chances are that everything will go away.

At any rate, this is just my opinion on what your doctor is thinking.

I wish you freedom from dizziness and "stomach problems."

[maile]

Hi there and welcome to the forum.

My question is do I try this without a diagnosis. I can't wrap my head around such a major change on a doctor's whim

Funnily enough, while Dr's often get a bad rap for mis diagnoses of celiac etc, in your case I suspect your doctor is not recommending this on a "whim", instead s/he seems like a somewhat well informed medico!

There is a form of gluten intolerance that causes "gluten ataxia", it is seen frequently in people who have the genetic markers DBQ1, subtypes 5 and 6 although there are others on this forum who have other markers that have also experienced neurological reactions to consuming gluten.

People with this form feel the effects in the brain as well as in the digestive system. There are many references to gluten causing neuro problems in a portion of the population and in some people it can mimic other types of neurological disorders. Google "Dr. Marios Hadjivassiliou" and you will see quite a number of references....on a personal note my mother was diagnosed with relapsing-remitting MS in 1966 and as early as the mid 70's she was advised to go onto a "low carb diet" (Atkins in the day) as a tool to help mitigate the episodes.

JMHO, but if you already have been labeled with IBS (around here IBS is generally acknowledged as a catch all "diagnosis" the doctors use when they really can't tell what's causing the stomach/intestinal distress) AND you have been dizzy for 3 years then it's worth a try to go Gluten Free for a while and see how your body reacts. After all if it has no effect then you haven't lost anything and if it does work then how wonderful would that be!

good luck

[Feyliza]

Thank you for the input. I did not think of the dizziness as a neurological reaction to gluten but I guess that is what it would be considered. It's not one of the symptoms listed on the websites about celiac or gluten intolerance so I was thinking it was a long shot that this would be related. I don't have problems with anemia, I am not malnourished or underweight. I've forever and always had stomach problems and just have come to see it as a part of life. No one in my family has been diagnosed with celiac disease.

This seems like a HUGE undertaking and I don't want to get my hopes up that it will work. Now I just need to figure out how to do it. Gluten is in EVERYTHING and I am hypoglycemic so I eat every 2 or 3 hours...that's a whole lot of snacks I have to figure out since my fall back food is granola bars and peanut butter crackers!

[tom]

I just want to find a way to get rid of the dizziness.

My increasingly frequent bouts w/ vertigo (ugh hated that) & nearly constant ataxia DISAPPEARED for good w/ in a week or 2 gluten-free.

(Also all the usual gastro symptoms & other neurological, physical & mental symptoms)

How can you NOT try it????

Good luck

[Sailing Girl]

Thank you for the input. I did not think of the dizziness as a neurological reaction to gluten but I guess that is what it would be considered. It's not one of the symptoms listed on the websites about celiac or gluten intolerance so I was thinking it was a long shot that this would be related. I don't have problems with anemia, I am not malnourished or underweight. I've forever and always had stomach problems and just have come to see it as a part of life. No one in my family has been diagnosed with celiac disease.

This seems like a HUGE undertaking and I don't want to get my hopes up that it will work. Now I just need to figure out how to do it. Gluten is in EVERYTHING and I am hypoglycemic so I eat every 2 or 3 hours...that's a whole lot of snacks I have to figure out since my fall back food is granola bars and peanut butter crackers!

You likely will find that the hypoglycemia improves markedly or goes away completely on a gluten-free diet. I used to be horribly hypoglycemic -- turns out it was just one of my many gluten symptoms.

I'm self-diagnosed, but there's little doubt I have Celiac based on my lifelong medical history (IBS, mouth sores, depression, DH, etc., etc. etc.). But I wasn't underweight (although it turns out I was deficient in many essential vitamins).

I originally gave up gluten to help my daughter (she was having major issues and I was breastfeeding). When she weaned and I tried to go back on gluten, I got hit with the same old symptoms and much, much worse -- dizziness/vertigo definitely was on the list, and resolved quickly gluten-free (although it comes back whenever I get glutened -- in fact, it's now one of my first glutening symptoms).

You couldn't pay me enough to wreck my health in a gluten challenge just to get a gold standard diagnosis.

Your doctor absolutely knows what he/she is talking about (wish there were many more like him/her out there!). Do this and watch your life improve dramatically!

[cbear6301]

I am new to this board but this intrigued me and I read this thread. I have had migraines and vertigo for over 10 years and really have been sick. During this time, my third child was stillborn for unknown causes, I have had serious bouts of vertigo which put me in the hospital, stomach problems, anxiety and various other things. I had one dr run a full ct scan which listed so much wrong.. but recently I have undergone major testing for neurological and balance problems. I was diagnosed with vertiginous migraines. I was put on meds.. which did not help.. and finally I went to see a chiro to see if he could. He looked at me and said you have a gluten intolerance. I really did not believe him because I have never heard of it. I asked my family dr and she was skeptical.. so I did research and found all of this.. I have to say I am shocked. I decided to go gluten free about 5 days ago on his advice and really have noticed some changes. I had an accident last night with a popcorn seasoning and felt awful today..

anyway.. just wanted to post with the vertigo and migraines..maybe this is my answer.

Christine

[pele]

I had a severe attack of vertigo about 25 years ago that recurred every few months in a milder form. I would wake up at night feeling like my brain was swimming around inside my skull and felt like I was standing upside down on the ceiling. Although I still have some residual effects, I have not had a single attack of vertigo since going gluten free two years ago.

Give it a try, you have nothing to lose and everything to gain. Pack some apples, bananas, dried fruit and nuts for snacks.

[samcarter]

I am gluten free even though my EMA came back negative. (Doctor wouldn't do the full celiac panel.) I had such a positive response to the dietary change, that my husband refers to me as having celiac disease. In his mind, there's no need for me to have a "formal" diagnosis, when he's seen the result first hand.

When I do get glutened, I get dizzy, lethargic, and have the brain fog. I also feel tingling in my legs and feet--I get the same reactions from dairy. And headaches! I had really bad balance as a child, it took me literally three years to learn to ride a bike and I fell all the time. Makes me wonder if I had symptoms back then that weren't noticed because they were my "normal".

I have since read that the EMA can come back negative in about 10-20 percent of patients with celiac disease. They are called 'seronegative" celiacs.

[RiceGuy]

I agree that you should try a gluten-free diet, and see how you feel. You may find relief from symptoms you don't even know you have, until they go away. The hypoglycemia is just one of many problems which can diminish or even completely go away. Please don't think for a moment that all you want is to get rid of the dizziness! If you are Celiac, continuing to eat gluten is playing Russian roulette with more diseases than you might have ever heard of.

I will add, that while the gluten-free diet may seem like a big, daunting step, you will become accustomed to it. It really isn't difficult, the food isn't boring, and it doesn't have to cost a lot. It might just seem like that initially. The diet each of us grows up with, is the one we usually think of as "normal". It is quite common to resist anything else, so trepidation is to be expected. It is no different for a person in another culture, where say rice and beans are the major staples.

This board is teaming with wonderfully helpful members who'll be glad to help you every step of the way. You're not alone!

[Ahorsesoul]

Did they treat/test you for "rocks in your ears". Yes, Benign Paroxysmal Positional Vertigo is very common and easy to treat. My dd suffered for years until a great physical therapist treated her.

Open Original Shared Link

Open Original Shared Link

[wendstress]

As a new celiac, here are a few pieces of advice:

1) Give it a try - you have nothing to lose and everything to gain. BUT, if you do it, you need to do it 100% because even a little gluten will mitigate the positive effects you may otherwise have.

2) I felt substantially better in 2-3 weeks. Give yourself this long. Then, I'll admit, I went back downhill as I believe my body went into healing mode and I became utterly and totally exhausted. I still have ups and downs, but am so much better than my gluten-filled life!

3) If you go this route - find some easy gluten free foods and stock up. Learning to cook gluten-free takes time, but there are some short term things you can do to get through a few weeks. For my first few weeks, I lived on rice cakes (with peanut butter or cream cheese), rice, Rice Chex, plain chicken, salads (watch salad dressings!), fruits.....

There are also a lot of ready-to-eat snack foods that a decent grocery store should have in a gluten free/natural foods aisle. The EnviroKidz bars are good, EnerG Crackers and Pretzels..... I LOVE Pamela's Pancake Mix! Made it for my folks last weekend (they were visiting) and they never would have known it was gluten-free.

4) I have a list of about 80 things a "Celiac can eat right away". It is a compilation of lots of brand name items that are readily available. It was really usefully to me right away. If you are interested, PM me and I can email it to you.

Yes, it is a pain in the butt to do..... But all you have to do is to take it 1 day at a time and see if it helps you to feel better. Seems like you have an awful lot to gain if this is truly the answer for you!

Good luck!

[Nancym]

My question is do I try this without a diagnosis. I can't wrap my head around such a major change on a doctor's whim.

I went gluten-free without a formal diagnosis and would do it again in a heart beat. I feel so much better.

Honestly, I think people make FAR too much fuss and drama over going gluten-free, especially doctors. I mean, you'd think it was like removing an eyeball or something. It isn't that hard to do once you put your mind to it and the payoff can be much improved health. I mean, wouldn't you be willing to give up a few treats to feel normal again? I sure would!

[whitball]

I was diagnosed in 2006. I have been worried about my children and have had two of my three children tested. Both did not not test positive, although I am certain that my daughter is a celiac. My oldest son was not tested, as he refused to do the testing. Two weeks ago, he described some of the same problems that I had at his age. Muscle pain in his back and legs, tingling in his fingers and toes, fatigue, etc. He has decided to go gluten free without an official diagnosis. It has been two weeks and he feels much better. I really am comfortable with his decision to not seek an official diagnosis. It's an expensive process (He has no insurance through his job) and he would really end up with the same information that we had from the beginning. He needed to be on a gluten free diet.

[pele]

Did they treat/test you for "rocks in your ears". Yes, Benign Paroxysmal Positional Vertigo is very common and easy to treat. My dd suffered for years until a great physical therapist treated her.

Open Original Shared Link

Open Original Shared Link

Right, the Epley maneuvers! I thought of this after I posted a reply here. The Epley maneuvers helped me, too. I couldn't find a doctor or anyone else to do it for me so I did myself and it helped a lot.