Ataxia from Gluten ?

[DJFL77I]

How long does it take to see any kind of Ataxia symptoms from Gluten Allergy if you keep eating Gluten?        Years?  months?

[cyclinglady]

You might never develop ataxia.  Maybe just Lymphoma (cancer) instead.    Maybe you become very anemic.  So much so that you have heart failure.  You can develop osteoporosis which can cause spontaneous fractures.  
 

Untreated celiac disease is a slow death.  But read from a more reliable source.  

https://newsnetwork.mayoclinic.org/discussion/left-untreated-celiac-disease-can-result-in-serious-complications/

The good news is that you can get feel better and have a long and healthy life on a gluten free diet.  There are a lot more illnesses that are a lot more horrible to have.  

But you should be talking to your doctor.  I feel like your doctor have left you to fend for yourself when you should have lots of support.  For example, you should see a dietician and get regular check ups.  Newly diagnosed celiacs go through a normal grieving process.  Your doctor should be there to support you.  Many be get your medical records and find a caring doctor.  
 

In the meantime, keep asking questions! 
 

Edited June 13, 2020 by cyclinglady

[trents]

Gluten allergy? Are you intending to ask about an allergic reaction to gluten or are you asking about Celiac Disease? Both conditions are related to gluten ingestion but they are very different. Celiac Disease is an autoimmune condition triggered by gluten and has many and can lead to many and serious health problems, some of which Cycling Lady listed above.

[DJFL77I]

Hi cyclinglady.. I just started having stomach issues.. On FEB 9'th...  and have been going to Gastro doc since.. and was just recently told on Friday that they found "Gluten Allergy" after having a Endoscopy done.. and biopsy....

I'm going to the Dr this week for follow up.. so I expect more info, follow up tests or care than.....

I have been off Gluten since yesterday........

[DJFL77I]

I've been feeling a bit dizzy though / off balance... some tension around my temples. kinda like a tension headache but without pain.  

I realize balance and equilibrium problems can be a number of things like Inner ear....  i do have some mild ringing in ear.. have had that for very long time though.. 10+ years..

[GFinDC]

I am assuming you are going to an MD, not an alternative medical person?  Gluten allergy is a term favored by the alternative medical people.  They tend to also favor getting money from  people for dubious treatments.

Anyhow, an MD might call celiac a gluten allergy just to make it easier for a non-medical person to understand I guess.  But celiac disease is not an allergy.  Allergies are an IgE immune response, while celiac is an IgA or IgG response.  That makes a big difference as the IgE immune cells mostly attack different body organs and areas, as in mainly respiratory tissues.

If you do have celiac disease, you may develop malabsorption of nutrients.  That can eventually cause many different heath symptoms and problems.  Some of the nutrients people have trouble absorbing are B vitamins, vitamin D and trace minerals.  Some of the B vitamins are very important for nerve health.  Gluten ataxia is when the immune system attacks cells in the brain though, not a nutrient deficiency.  Hopefully your symptoms are nutrient deficiency related and not from ataxia.  A good B complex pill daily may help.  Your doctor should be able to test your levels and tell you what you need to take.  Getting most of our vitamins and minerals from food is a good way to go though.  Supplement pills are not always well absorbed.  That means eating nutritious foods is very important.

Meats, veggies, nuts, fruit and eggs are good food choices.  Most processed foods should be avoided for 6 months or so to give your GI system a chance to heal.  Oily fish like salmon, sardines, tuna and mackeral are high in vitamin D.

Edited June 14, 2020 by GFinDC

[DJFL77I]

I've been going to a Gastroenterologist / MD.  Maybe I can find a local specialist after.

Well I've only had this since early Feb..  or had these symptoms.. not sure how long it would even take for something like Gluten ataxia to even develop or be noticed?

I actually first noticed the Dizziness about 2 weeks after my upset stomach issues began...  It lasted for about 4 days and then completely went away..

Then I'd notice at times I would feel a bit light headed after eating.. it would go away....

Then the dizzy feeling finally came back again and has been hanging around daily since it came back... got a little better from when it first returned.. but still there..

[cyclinglady]

Your bouts with dizziness could easily be due to celiac disease which is a systemic disease.  It can affect many body systems.  Your best bet is to follow the gluten free diet as recommended by your doctor.  With time, these symptoms will be eliminated if they are actually due to active celiac disease.  I do not want to say for sure, because I do not know you, am not a doctor and am just some lady on the internet!   😆

Time.  How long will you have to wait?  For most members, they report feeling really good after a year.  It takes time for you to get sick and time to heal.  Along the way, you will see signs of improvement.  
 

What can you do now?  What can you do to possibly speed up the healing process?  Research.  Really get to know the diet.  Follow the advice of the old timers.  Like do not eat out until you are feeling well.  Stick to real food.  No need to worry about ingredients on single items foods like plain meats, fish, veggies, fruits, rice,  nuts, etc.  if you eat processed foods, look for those with few ingredients.   Keep a journal that notes your symptoms and what you ate.  Celiacs tend to also have other food allergies or intolerances.  Lactose is a common food intolerance.  I was lactose intolerant, but with healing, it resolved.  I do have some other intolerances like to garlic and onions and those have not resolved.  Everyone is different.  Celiac disease affects everyone differently.  

I would not worry about your dizziness.  Do bring it up to your doctor.  But I am betting that he will focus on your healing from celiac disease first as chances are it will resolve many symptoms.  Take one step at a time.  
 

You may not have ataxia.  Know that most celiacs suffer from minor neurological symptoms.  Know that many celiacs suffer from depression or anxiety.  This can resolve with healing.  When I get a gluten exposure, my kid notices it before me.  I start to get cranky and anxious.  

I hope this helps.  You are not alone.  

 

[trents]

There are often various withdrawal symptoms when going off gluten. 

Endoscopies are done to check for Celiac Disease. Damage to the villi (tiny finger-like projections in the mucosal lining of the small bowel) is the defining characteristic of Celiac Disease as opposed to a gluten allergy. The villi create surface area for the absorption of nutrients. When you have Celiac Disease, consuming gluten causes the body to attack those tissues and round those finger-like projections off. This reduces the surface area of the absorption process and causes nutrient deficiencies which in turn generates other health issues.

So you need to pin your doctors down and ask, "Do I have Celiac Disease or just a gluten allergy?" 

Either way, you need to educate yourself as to the myriad ways gluten is hidden in processed food products and the terminology used to disguise it. And you need to be become aware of cross contamination issues that happen in processing and food handling. A processed food item may not list wheat, barley or rye in the ingredients but may have been produced on equipment that does such that it incidentally will contain some gluten. Did you know for instance that most soy sauce contains wheat and most canned soups do as well. Read the labels of these products the next time you are in the grocery store and you will be amazed. Read the ingredient label on Campbell's tomato soup for a starter. Wheat starch is commonly used as a thickener and a texturing agent in processed foods. Many corn and rice-based breakfast cereals will contain malt flavoring which is made from barley, a gluten-containing grain. Wheat starch can also be used as a filler/binder in medication tablets and capsules.

Going gluten free is often confused with a low gluten diet. Just reducing major sources of gluten in your diet such as pasta, bread and pancakes does not qualify as gluten free eating. It is actually low gluten eating. 

You also need to start taking some good gluten free vitamin products to compensate for the loss of the nutrients added into many grain-based processed foods.

Yes, there is quite and education process involved in eating gluten free and it is also really challenging from a social perspective. It can be overwhelming at first.

[cyclinglady]

Excellent advice, Trents!  I just want to add that everyone should get and maintain their medical records/labs.   This has been invaluable for me.  My doctors for years have been giving me copies of my lab tests or I can get all my online.  It is your right to have this information!  You paid for it.  

Let’s face it.  When you are sick, are you really able to absorb everything the doctor says?  

[Kate333]

Thank you Cyclinglady for your comprehensive comments to DJFL771.

I also am new to this topic, forum and have experienced similar and "odd" symptoms: constant lightheadedness/off-balance feeling, headaches, constant tinnitus, noise sensitivity, brain fog, fatigue, insomnia, as well as recent sudden "allergies" to even healthy foods like nuts, fruits, and low-fat dairy (even yogurt!).  It is reassuring to know I am not "imagining things" as I often feel when my PCP, GI docs don't really seem to know how to discuss or respond when I mention these symptoms.  Like most doctors, they seem to be trained to focus primarily on objective tests, evidence (blood test numbers and biopsy results). 

I also admit I can't tell whether these recent symptoms and lingering digestion probs are due to gluten issues (although I have been on gluten-free diet since January 2020), or anxiety/depression/insomnia or IBS--all quite understandable in response to the stress of this new diagnosis, radically changing my diet, and the recent pandemic challenges.  ALL of these can be triggers and deepen depression/anxiety/insomnia.  As if we already didn't have ENOUGH to worry about...😆

Thanks for your reassurances that these symptoms are likely fleeting and will likely "resolve" with time and adherence to the gluten-free diet. 

I was also wondering how long for tTG blood tests to return to "normal" range while on a strict gluten-free diet?  My levels had dropped from high of 224 (after first diagnosis and beginning diet in Nov. last year) to 73 in Feb. 2020.  But last week's reading was slightly higher, up to 81.  I was rather surprised, expecting/hoping for another drop in numbers.  Is it unusual to take awhile to drop back to "normal" range on gluten-free diet?

Thanks for any comments.

 

[cyclinglady]

@Kate333

Congratulations on getting your TTG number down!  You are definitely on the right track.  It can take up to a year or longer for antibodies to normalize.  But do not worry so much about the blood tests.  Try to base your health on your symptoms.  Celiac disease antibodies testing was designed to help diagnose but not monitor dietary compliance.  Doctors use it because the test is non-evasive compared to small bowel biopsies which are costly as well.  
 

I can share that my DGP IgA was still elevated when I had my repeat endoscopy/biopsies which showed complete healing.  Why the continued elevation?  My doctors suspect ongoing autoimmune issues.  The good news is that I had healed.  I even have the photos showing healthy villi.  The bad news was a new diagnosis of Autoimmune Gastritis which is commonly linked to Hashimoto’s Thyroiditis.  
 

Know that  you can continue to develop other autoimmune disorders.  My mom was just diagnosed with RA after years of Graves (hyper thyroid) and fibromyalgia.  She is almost 80!  
 

I am trying hard to avoid another AI.  I think the gluten free diet helps.  My thyroid actually stopped being enlarged and those thyroid nodules are gone!  Is it the diet?  Maybe not, but keeping my celiac disease from flaring (activating) can prevent my other AI disorders from flaring.  They are all linked in my opinion.  
 

Anxiety, depression and insomnia are common.  Are they are due to autoimmune or malabsorption?  Who knows?  I am also post menopausal.  Still getting hot flashes which, based on the locker room gossip at my local gym (I teach seniors), you can be in your 80’s and still get hot flashes!  
 

I digress, but once a male nurse took my temperature at the exact moment I had a hot flash.  He told me that I was sick.  A fever of 101.4.  I told him I was well.  He took my temperature again after seeing the doctor and it was normal.  He told me he was going to be nicer to his  menopausal wife!  
 

Give it time.   Anxiety and depression should resolve.  If not talk to your doctor.  Do your research though before taking medications.  Lots of problems if improperly prescribed.  I have a family member trying to get off Benzos (anxiety) which are more addictive than opioids!  Prescribed by a GP!  

If your GI upset continues, talk to your doctor again.  Make sure you do not have SIBO.  Keep a food and symptom  journal.  Some intolerances develop out of the blue.  I got back dairy, but not garlic, nuts, pineapple, or onions.  Do not eat out (hard to do in a pandemic).  Stick with real food as much as possible.  
 

You will feel better.  Be patient.  Ask any questions!  

 

Edited June 25, 2020 by cyclinglady

[Kate333]

@cyclinglady...thanks so much for your kind, reassuring reply and generosity in reading/responding to my Qs.  As I am so "new" to the world of gluten issues, I'm trying to find the "best way" to heal and separate medically-sound info./good tips from all the Dr. Google "quackpots" and unproven sales pitches and useless "information" on the Internet...Some are pretty obviously to detect...others less so...and some give downright conflicting (e.g., FODMAP diets).

The only thing I really know for certain is that I was diagnosed with "possible" Celiac (based on blood test and normal biopsy) last September and my gut/digestion symptoms have not consistently improved since then, even on what I thought was a gluten-free diet.  My GI doc has also mentioned "possible IBS or SIBO" but he and my PCP can't really definitively explain why no real improvement yet.  I have tried 2 courses of Rifaximin.  The first one last October seemed to "normalize" my BMs pretty well for about 6 weeks. Yay! Then in Nov., after minor foot surgery followed by quickly/leaving a new job that turned out to be a dud, my BMs got bad again (which, IMO, points to stress/gut/IBS).  

I started a 2nd course of Rifaximin in Jan. but no improvement.  Gut seemed to finally calm down a bit after Jan/Feb. then flared up again in March (interestingly, right after the pandemic/quarantine/unemployment began). Again, that tells me stress/IBS are BIG factors in my continued symptoms.  In June, I had another tTG test and was assuming/hoping for good news (continued, consistent drop in #s like I had seen in all previous blood tests).  Numbers showed slight increase from 73 to 81, which makes me wonder whether I'm STILL getting gluten exposure? So here I sit now in June 2020, about 6 months after I began the gluten-free diet, feeling pretty down and very "back to square one" in symptoms and blood tests that won't seem to budge--no matter what kind and how many changes I make to my diet and life.  I don't know what more I can do to eliminate G in addition to already exclusively cooking fresh, unprocessed at home.  I have also cut out all dairy and obvious trigger foods like nuts, sugar.  Also, I live alone and never share meals or eat out.  I recently started probiotics (pill form, taken for about a week so far) to help "rebalance" gut bacteria post-Rifaximin.  No new or weird side-effects so far, so I am hoping they help in the long run...I am getting ready to very slowly, gradually try Psyllium Husk to hopefully help improve digestion.  

I must admit this gluten obsession "journey" has made me rather paranoid about EVERYTHING I eat (wondering if gluten particles somehow get stuck on fruits/veggies??) and do.  I worry:  Are these blood test numbers not budging because I am using "contaminated" dental floss? Medications? Shampoo? Hand cream?  Toothpaste?  Could the old microwave (I am a renter) or bottled drinking water or even the air conditioning/heating vents in my home be contaminated with hidden trace gluten on wall insulation/building materials?  And why should I trust food manufacturers who even display "gluten-free" labels on their products?  How do we REALLY know for sure?  No agency really tests this stuff, and many people say there is a difference between a label that says "gluten-free" and a label that says "CERTIFIED gluten-free".  SHEESH!! IMO, product labels are total nonsense because companies have a long history of misleading consumers on food/product safety overall.   

Okay...I know these all thoughts seem pretty "far fetched" but that is my natural hypochondriac's response as I read so many articles on the internet..🤒.  Sometimes I think I need to just stay off the internet altogether--including Gluten chat rooms...to say, "To hell with it all, I will just do the best I can" and keep up with any GI tests and leave it at that.  That will have to be enough because worry/obsessing about this problem is probably 90% of the reason for my continued GI upset, etc. despite a gluten-free diet.  The gut isn't called a "second brain" for nothing!!

BTW...Have you tried holistic or TCM medicine?  Not as a replacement for gluten-free diet/traditional GI medicine but as complementary healing techniques or mental health therapy.  If so, any luck in calming your nerves/symptoms? 

Thanks again for your kind responses! 

 

 

 

 

[cyclinglady]

I think you are on the right path.  Your numbers have gone down.  It can take well over a year for those to drop in the normal range.  And they might not ever drop into the normal range.  If so, I think you have to gauge how you feel (symptoms).  

The gluten-free diet has a steep learning curve.  I was lucky.  My husband had been gluten-free for 12 years prior to my diagnosis.  So I really knew the diet well.   
 

Here is the reality.  We are older.  It takes a lot more time to heal and a lot more time  to change behavior.  If your brain and nerves have been damaged, it can take even longer.  I mention brain because of anxiety, depression and IBS.  I would look for ways for you to handle stress.  Like do not watch/read the news!  Learn relaxation techniques, exercise, engage in doing something good for the community, etc.  

What do I do to relieve stress?    I pull weeds.  Work in my garden.  Walk.  Ride my bike.  Call friends. Hang around this forum.  I practice deep breathing and visualize laying on the beach and listening to the ocean waves.  I play an instrument.  Find something you like.  

I do not worry about toothpaste, floss, lotion, etc.  but I make sure gluten is not in my shampoo, hairspray, or lipstick (I use Gabriel which is certified gluten-free.  I still wear it in the house.  Joan Collins once said lipstick is her first go-to cosmetic when I was young.  It was not my first choice but with my gray hair, I need color!  Thankfully, I have some cute masks I sewed).  
 

Medications can be a problem.  Rare, but possible, especially now with our supply chain issues where generics come from India or China (that would be ALL antibiotics in the world).  Look for the inert ingredients on pillbox which is a US government site. 
 

Yikes!  I need to go.....more later.  

 

 

[Kate333]

Thanks again, cycling lady!

[trents]

10 minutes ago, cyclinglady said:

I think you are on the right path.  Your numbers have gone down.  It can take well over a year for those to drop in the normal range.  And they might not ever drop into the normal range.  If so, I think you have to gauge how you feel (symptoms).  

The gluten-free diet has a steep learning curve.  I was lucky.  My husband had been gluten-free for 12 years prior to my diagnosis.  So I really knew the diet well.   
 

Here is the reality.  We are older.  It takes a lot more time to heal and a lot more time  to change behavior.  If your brain and nerves have been damaged, it can take even longer.  I mention brain because of anxiety, depression and IBS.  I would look for ways for you to handle stress.  Like do not watch/read the news!  Learn relaxation techniques, exercise, engage in doing something good for the community, etc.  

What do I do to relieve stress?    I pull weeds.  Work in my garden.  Walk.  Ride my bike.  Call friends. Hang around this forum.  I practice deep breathing and visualize laying on the beach and listening to the ocean waves.  I play an instrument.  Find something you like.  

I do not worry about toothpaste, floss, lotion, etc.  but I make sure gluten is not in my shampoo, hairspray, or lipstick (I use Gabriel which is certified gluten-free.  I still wear it in the house.  Joan Collins once said lipstick is her first go-to cosmetic when I was young.  It was not my first choice but with my gray hair, I need color!  Thankfully, I have some cute masks I sewed).  
 

Medications can be a problem.  Rare, but possible, especially now with our supply chain issues where generics come from India or China (that would be ALL antibiotics in the world).  Look for the inert ingredients on pillbox which is a US government site. 
 

Yikes!  I need to go.....more later.  

 

 

CL, why do avoid gluten in shampoo but are not concerned about it in lipstick and toothpaste?

[cyclinglady]

37 minutes ago, trents said:

CL, why do avoid gluten in shampoo but are not concerned about it in lipstick and toothpaste?

No, I am concerned about lipstick, shampoo (a stretch)  and hairspray.  Anything that I could ingest.  I should not worry about lipstick though.    The Gluten Free Watchdog (aka the Gluten Free Dietitian) said that there is would not be enough gluten to cause harm because no one consumes that much lipstick.

http://glutenfreedietitian.com/articles/BLOGPersonalCareProductsBlog.11.pdf

 

 But sometimes piece of mind is priceless!  I am not concerned about toothpaste.  That is because I have never seen a toothpaste that has gluten listed within the ingredients.  My dentist has mentioned that dental suppliers are really making sure gluten is not in any dental products.  Though each time I ask!  Keeps my dentist on his toes.
 

Bottom line, I read all labels each and every time!  

Edited June 25, 2020 by cyclinglady

[Kate333]

I don't usually wear lipstick, makeup or dress up much these days--esp. since the pandemic because I stay home except when I take walks outside, or for a quick dash to the grocery store or pharmacy early AM.

Can anyone recommend reliably gluten-free shampoo, OTC hair color, and hand/body lotion/moisturizer brands?  My skin is esp. dry now (not sure if related to new diagnosis and/or high summer temps).  I have been using Suave shampoo, Vaseline "intensive care" unscented lotion for YEARS, practically EVERY DAY... I noticed that none of these products are labeled gluten-free so perhaps they are the "hidden" gluten sources that has kept my tTG elevated despite gluten-free diet?  

Also, I have to take Levothyroxine (manuf. by Mylar) every day (as thyroid replacement) and Lovastatin (manuf. by Mevacor).  How do I know they are safe?  I hope levothyroxine is okay as I literally need that pill every day to stay alive...🙂

 

 

 

 

[trents]

Sorry, CL I see that I misread your post the first time.

[cyclinglady]

51 minutes ago, trents said:

Sorry, CL I see that I misread your post the first time.

No worries.  I am usually in a rush myself.  Trying to squeeze in a reply in just a few minutes. Ah, the dangers of multi-tasking.  My grammar and spelling are awful!  Typing on an iPad is not easy, but it is more convenient than my laptop. 

[Kate333]

Update:  I called Vaseline's 800 # to inquire whether their hand lotion and any of their products have gluten ingredients.  The rep told me "I don't know but Vaseline doesn't test their products to ensure no gluten in them."  I guess I will just toss them out to be safe.  I'm really surprised that EXTERNALLY APPLIED products could potentially mess up someone's gut as bad as gluten in food! 😝

[cyclinglady]

1 hour ago, Kate333 said:

Levothyroxine

 

2 hours ago, Kate333 said:

I don't usually wear lipstick, makeup or dress up much these days--esp. since the pandemic because I stay home except when I take walks outside, or for a quick dash to the grocery store or pharmacy early AM.

Can anyone recommend reliably gluten-free shampoo, OTC hair color, and hand/body lotion/moisturizer brands?  My skin is esp. dry now (not sure if related to new diagnosis and/or high summer temps).  I have been using Suave shampoo, Vaseline "intensive care" unscented lotion for YEARS, practically EVERY DAY... I noticed that none of these products are labeled gluten-free so perhaps they are the "hidden" gluten sources that has kept my tTG elevated despite gluten-free diet?  

Also, I have to take Levothyroxine (manuf. by Mylar) every day (as thyroid replacement) and Lovastatin (manuf. by Mevacor).  How do I know they are safe?  I hope levothyroxine is okay as I literally need that pill every day to stay alive...🙂

 

 

 

 

Your thyroid medication looks good.  You can check this 2017 list by a pharmacist who champions celiacs.  Also, there is Pillbox,  a NIH gov site:
 

http://www.glutenfreedrugs.com/newlist.htm

 

https://pillbox.nlm.nih.gov/pillimage/search_results.php?getimprint=&getingredient=Levothyroxine&getshape=&getinactiveingredients=&getfirstcolor=&getauthor=&getsize=&getDEAschedule=&getscore=0&getlabelCode=&getprodCode=&getnorelabel=NULL&hide=1&submit=Search

I can not find your statin.  Pharmaceuticals get bought and sold all the time.  Ask your pharmacist to check.  Also, just because I said it was okay, based on the list, check with the pharmacist.  Ask to see the drug insert page that lists the inactive ingredients that bind the pills.  

Suave and Vaseline Intensive care are gluten free.  Suave does a good job disclosing ingredients.  I think both are Unilever.  

[trents]

Yeah, as CL said, pharmacies change suppliers (especially for generics) like you and I change socks. It's all about where they can get them the cheapest at any given point in time. Also, there's no guarantee that even with name brands the formulations won't change. And it can be difficult to get a definite answer when trying to determine if a med has gluten. All the more reason to start moving production back to the USA where there is better regulation.

[cyclinglady]

8 minutes ago, Kate333 said:

Update:  I called Vaseline's 800 # to inquire whether their hand lotion and any of their products have gluten ingredients.  The rep told me "I don't know but Vaseline doesn't test their products to ensure no gluten in them."  I guess I will just toss them out to be safe.  I'm really surprised that EXTERNALLY APPLIED products could potentially mess up someone's gut as bad as gluten in food! 😝

No!   They are gluten free.  I use them.  The company does not test.  You are not consuming them.  The risk for gluten contamination during manufacturing of personal care products is nil too.   The company rep is saying what the legal department dictates.  

[Kate333]

@CL, thanks for posting that link to check drugs and your response (and for checking statins).  I hear what you say about Vaseline and corporate "CYA"-speak.  But I still have my doubts because, if they were truly gluten-free, how hard is it put a little gluten-free label on their product with a CYA disclaimer: "We don't use any gluten ingredients, but we also don't test for G so can't be 100 percent sure"?  That's the kind of verbiage seen on so many food packages.  Not to be argumentative, but I'd rather just err on the side of caution for now and seek clearly gluten-free labeled products, at least until my symptoms/healing have progressed so I can feel confident I am doing EVERYTHING in my power to avoid even "minor" or miniscule G exposure.

=================

"All the more reason to start moving production back to the USA where there is better regulation."

@trents, AMEN to that sentiment!  But, realistically, that will probably NEVER happen in this country where corporate $$$ has become our national religion and such a corrupting power in politics and the medical "industry"...:).