Dizziness .... Still??

[Estere08]

Semi new to diagnosis. I feel I am doing well avoiding gluten and cross contamination; but how long is it okay to still have dizziness? Does that mean I still have cross contamination - or is it possible I am gluten free just still experiencing symptoms? Should I truly be COMPLETELY symptoms free if I am truly gluten free as my GI doc states? 

[cristiana]

Hello Estere and welcome to the forum!

A couple of questions:  how long have you been gluten free for? 

Secondly, what form does your dizziness take? Can you describe it? Is it a spinning sensation, or do you feel like you are walking on board a ship on rough seas?  Or do you feel lightheaded? etc...  I suffer from a sort of seasickness feeling when I've been glutened, but for many months in the year following my diagnosis I felt like I was walking on board a moving ship.  It turned out it was nothing to do with gluten - I had cervical vertigo, due to neck problems.

Cristiana

 

 

[Estere08]

Thanks for your response.

Diagnosed March of this year.

It use to feel more like a spin with nausea, now feels more like lightheadedness, balloon head, with maybe once a week feeling of starting to pass out feeling heavy sideways but catch myself. Any tips /ideas would help. 

[trents]

9 minutes ago, Estere08 said:

Thanks for your response.

Diagnosed March of this year.

It use to feel more like a spin with nausea, now feels more like lightheadedness, balloon head, with maybe once a week feeling of starting to pass out feeling heavy sideways but catch myself. Any tips /ideas would help. 

I would not rule out the possibility of a health issue unrelated to celiac disease or gluten. But first, double-check your pantry and medicine cabinet for unexpected sources of gluten. Don't forget that food companies can and do change formulations such that something you eat regularly that had been gluten free no longer is. Check ingredients closely for any processed food item you buy.

[Estere08]

So I need to be even more strict ? You feel it is possible to be symptom free ? 

[trents]

1 hour ago, Estere08 said:

So I need to be even more strict ? You feel it is possible to be symptom free ? 

With celiac disease, the goal should not be to cut back on gluten but to totally eliminate it. Recent studies have shown that most people with celiac disease are actually practicing a lower gluten diet as opposed to gluten free. This is particularly true of those who still dine out. Even low levels of gluten exposure can keep the fires of the disease smoldering and prevent healing of the small bowel lining. Your GI doc was spot on. You need to take this more seriously and you need to take CC more seriously. 

[trents]

It is possible to be symptom free if you are truly gluten free. But in reality, many celiacs take so long to get diagnosed that irreversible damage has been done to some body systems and they will not be totally symptom free because of the collateral damage.

[knitty kitty]

10 hours ago, Estere08 said:

Semi new to diagnosis. I feel I am doing well avoiding gluten and cross contamination; but how long is it okay to still have dizziness? Does that mean I still have cross contamination - or is it possible I am gluten free just still experiencing symptoms? Should I truly be COMPLETELY symptoms free if I am truly gluten free as my GI doc states? 

Welcome to the forum!

I've suffered from dizziness.  I found several things contributed to my dizziness.  

Dairy...  not only am I lactose intolerant, I cannot tolerate casein.  Lactose is the sugar in milk products.  Lactose intolerance is common in newly diagnosed Celiac patients.  The enzyme (lactase) that digests lactose isn't being produced by our damaged intestinal villi.  Casein is a protein in milk products that can cause allergic type symptoms.  One of the first symptoms I get if exposed to dairy is dizziness.  Dizziness so bad I walk like I'm drunk.  I had to exclude dairy from my diet well before my Celiac diagnosis.

Diabetes... I developed Type Two Diabetes.  Low blood glucose levels can make me dizzy... conversely, high blood glucose levels can make me dizzy as well.  I always grab my glucose meter to check my blood sugar if I'm feeling dizzy.  Diabetes is another autoimmune disease that can occur with Celiac Disease.

Dehydration... not enough water can make me feel lightheaded and unsteady.  A good rule of thumb is to drink eight ounces of water after every trip to the restroom.  As a diabetic, this is important.  We need water to help us digest carbohydrates.

Vitamin D deficiency...  I had an extreme Vitamin D deficiency prior to diagnosis.  Vitamin D deficiency (along with calcium deficiency) can affect the small bones in your middle ear resulting in dizziness.  Many newly diagnosed Celiac patients have Vitamin D deficiency.  Vitamin D helps regulate our immune systems by reducing inflammation, so we use a lot.

Deficiencies in Vitamin B12 and/or Iron....

I developed anemia due to deficiencies in B12 and Iron.  Symptoms of anemia include dizziness and fatigue.  

B12 needs an intrinsic factor produced in the stomach for absorption.  Sometimes this intrinsic factor is not produced due to gastritis that may accompany Celiac Disease.  Iron deficiency due to malabsorption or loss in the intestines or bowel due to bleeding is sometimes seen.  

Deficiency in Thiamine (Vitamin B1)... heavy sigh.

I developed a Thiamine deficiency.  One of the first symptoms I had was dizziness.  I really did walk like I was a drunk.  My doctors shrugged their shoulders and walked away when I insisted I did not drink.  My doctors didn't connect thiamine deficiency with the malabsorption of Celiac Disease.  

Thiamine deficiency is commonly found in alcoholism, so doctors don't recognize thiamine deficiency outside of alcoholism.  However, because we have absorption problems due to damage in our small intestine, and because we use more, we can definitely develop a thiamine deficiency!   

Thiamine is one of the eight water soluble B vitamins.  Every cell in our bodies uses thiamine to function.  We need more thiamine when we're ill with a fever, have diarrhea, vomiting, or constipation, or work outside or exercise.  We need more thiamine if we have Diabetes (76-91% of diabetics of either type are thiamine deficient).  We need more Thiamine if we're obese.  (Our bodies convert carbohydrates to fat more readily if we're thiamine deficient.)  We need more Thiamine if we have malabsorption problems as with Celiac Disease.  Thiamine can't be stored for long, about 28 days.  We can use up our stores in as little as nine days.  We can be subclinically deficient for years as I was. 

Deficiencies in just one vitamin is rare.  It is better to supplement all the eight B vitamins (because they are all interdependent), the four fat soluble vitamins (Vitamin D is one) and important minerals like iron, calcium and magnesium.  

Checking Celiac Disease patients for vitamin and mineral deficiencies is part of proper follow up care.  Many doctors only check Vitamin D and B12.  However, some vitamin deficiencies are not reflected in blood tests.  Taking a good B Complex, Vitamin D, Vitamin C, and multivitamin with minerals may be beneficial.  Eating a nutrient dense diet will help.  Talk to your doctor and nutritionist or dietitian! 

I'm not a doctor.  I'm a microbiologist.  These are my experiences and what helps me.  

When Dizziness strikes I check my "D" list:

Dairy, Dehydration, Diabetes. Deficiencies.

Hope this helps you on your Celiac Journey!

P.S. forgot to add these links...

"Vestibular signs of thiamine deficiency during the early phase of suspected Wernicke encephalopathy"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082353/#!po=74.1379

And...

"Influence of supplemental vitamin D on intensity of benign paroxysmal positional vertigo: A longitudinal clinical study"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913711/

 

 

Edited October 22, 2021 by knitty kitty
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[Estere08]

Thank you so much for all your info. It is helpful. My GI feels my dizziness is a form of migraine, he’s not attributing it to digestion. He feels that if there is no gluten in the system there is no disease process. So it’s been frustrating to figure out the normality or abnormally of the dizziness. I do understand how mineral and vitamin deficiencies can produce symptoms, and I so I do hope he will agree to do some blood work next follow up. My last blood work only showed odd liver numbers (elevated ALT more specifically). 
Thank you for your support. 

[trents]

Persistent, elevated liver enzymes was what led to my celiac diagnosis. The liver enzymes were not majorly high but persisted over several years. As soo as I eliminated gluten from my diet the liver enzymes normalized. About 18% of celiacs experience elevated liver enzymes. However, sometimes damage to the liver is irreversible. Not to scare you. You might google liver damage and celiac disease.

Not sure what your doctor means when he says, "if there is no gluten in the system there is no disease process." In your reply to my original post you ask, "So do I need to be even more strict?" That suggests to me you are not being as careful as you might be. Truly eliminating gluten from the diet generally involves a significant educational curve.

How long have you been trying to eat gluten free? You indicate are "semi new to diagnosis." It often takes about two years after going truly gluten free for complete healing of the villi, or even longer.

[knitty kitty]

I agree with @trents.  One must be very careful and learn where gluten hides and what other foods can cause continuing inflammation (like dairy).  

I followed the AutoImmune Protocol diet developed by a doctor with Celiac for herself and her family.  I found this diet helped me feel better quickly and identify problematic foods more quickly.  I found cutting out high histamine foods really helped, too.  

Your doctor is not quite correct.  As long as your body has the antibodies to gluten circulating, the disease process will continue.  Everyone is different and their antibodies decrease at different rates depending on many factors including their state of health and genetic propensity to other autoimmune diseases, as well as adherence to the gluten free diet.

Riboflavin (Vitamin B2) is known to help relieve migraines.  I had gluten related migraines, too.  

My fatty liver resolved once I had been on the AutoImmune Protocol diet and had been healing for several months.  

Keep us posted on your progress! 

 

 

[trents]

37 minutes ago, knitty kitty said:

 Your doctor is not quite correct.  As long as your body has the antibodies to gluten circulating, the disease process will continue.  Everyone is different and their antibodies decrease at different rates depending on many factors including their state of health and genetic propensity to other autoimmune diseases, as well as adherence to the gluten free diet.

Just to camp on what knitty kitty said here, in preparation for the antibody test, the gluten challenge pretest guidelines recommend the consumption of gluten daily in the amount equivalent to two slices of wheat bread for 6-8 weeks. In other words, it takes weeks for the antibodies to accumulate to the point where they can be reliably detected if someone has been on a gluten free diet before diagnostic antibody testing. So, it stands to reason that it would take time for antibodies to leave the system after beginning the gluten free diet. And if you are getting regular CC then they will persist because inflammation is persisting.

[Estere08]

I was diagnosed March 2021, so I consider myself pretty fresh to this lifestyle. @trentsWhen referring to whether I could be strict, what I meant is my GI mentioned that people have different sensitivity levels, and some people are so sensitive they need different pots/pans/dish sets/ utensils !? @knitty kittyIll try the Vit B2 for possible migraines, thanks !   

[trents]

Wow! Your GI doc seems to be up on celiac disease. That is very rare. You've got a jewel of a doc there.

[knitty kitty]

@Estere08,

Discuss all supplements with your doctor before starting them!

Your doctor should test you for deficiencies before starting supplementing, otherwise the tests won't be accurate.  The tests will measure the supplements taken. 

Blood tests for some B vitamins don't accurately reflect deficiencies because most vitamins are used inside the cells of tissues and organs.  The body tries to keep a certain amount of vitamins in the blood to supply the brain, while the tissues  and organs starve.  

Ask for the erythrocyte transketolase test to measure thiamine deficiency.  It can be more accurate than a blood test.  Thiamine deficiency can cause dizziness and headaches.  

Remember to supplement all the B vitamins because they need each other to function properly.  

Thiamine needs magnesium.  Calcium, zinc, iron and ferritin levels are important, too.  

Keep us posted on your progress.  

[trents]

I think it should be safe to supplement with B-vitamins without consulting your physician since they are water soluble and any excess will be peed out. Get a good high potency B-complex (gluten free). Costco's Nature Made brand is a good choice.

[knitty kitty]

Supplementing before testing for deficiencies will skew the results.

For example, supplementing with Folate (Vitamin B9) can mask or hide a deficiency in Cobalamine (Vitamin B12).  Since dizziness can be a symptom of B12 deficiency, supplementing before testing would hide this.

Talk with your doctor before beginning supplementation.  Some doctors choose to approve supplementing instead of testing for deficiencies other than B12 or Vitamin D.  

Yes, supplementing with B vitamins and Vitamin C is safe because they are all water soluble and any excess is excreted in urine.