Major Glutening

[FayeBr]

Hi to all I am 4 years Celiac now. I have Ataxia too from gluten and it’s been a major learning curve and adjustment. But my query is about a recent set back. I was Glutened and started an OTC medicine to cope with a symptom. It stated it was free from gluten specifically. But in the following weeks I was getting more ill and couldn’t fathom what was wrong. I had gastritis which is awful and lots of other neuro and body symptoms that I get when Glutened. I always find it difficult to think straight too because of the brain fog and fatigue so this wasn’t helping me think logically. And then the lightbulb moment of the medication. I emailed the company in my gluten haze (by this time the symptoms were awful and reminded me of my pre gluten free days) and they responded saying although it states ‘this product does not contain gluten’ they could not guarantee it didn’t have gluten in it from manufacturing processes etc etc. I stopped it just over 2 weeks ago. I had been taking it for 6 weeks. So in the last few weeks I have started to improve from being bedridden with fatigue and aches/pains,  gastritis, abdominal pain and GI problems, brain fog, mental health symptoms, pins and needles, migraines and much more to just about functioning. I feel I have done so much damage to my body and it’s such a set back. But my question is has anyone else had a major episode like this and how long did it take to recover? I still have symptoms now and it’s been over 2 weeks. I’m afraid I have made my Ataxia worse and the panic attacks and anxiety are through the roof. I’d forgotten what that was like. But any thoughts or experiences would help. Thank you. 

[knitty kitty]

So sorry to hear you are going through this!  

What OTC med did you take?  

[Scott Adams]

What you've described is every celiac's nightmare, and it's very frustrating to be failed by a product that was specifically labeled as safe. It would be great to know which product it was so others here can be warned.

Six weeks of inadvertent exposure is a significant insult to your system, and it's no wonder that after two weeks you are still feeling the effects. The body, especially the nervous system when dealing with ataxia, needs considerable time to calm the inflammatory response and begin to heal. It's common for a major glutening to take several weeks to even a few months for symptoms to fully resolve, so be patient and gentle with yourself—you are on the right track. The anxiety and panic are also a very real, physiological part of the reaction for many of us, compounding the feeling of helplessness. What you're feeling is not a step back to your pre-diagnosis state; it's a severe but temporary flare. Focus intensely on the basics now: rest, hydration, and simple, whole foods. You have not undone all your progress. Your body remembers how to heal; it just needs time and a safe environment to do so. You are not alone in this.

[FayeBr]

Thank you for your reassurance. It can sometimes feel very lonely with this disease and a constant battle. The product was Gaviscon Advance Aniseed which I was taking every day due to having gastritis from my gluten exposure. It states on the leaflet that it does not contain gluten. So I thought I was safe. But my symptoms were getting worse each day, causing me to take more gaviscon. I was in a spiral without knowing it. I knew that nothing else had changed for me other than the product. I emailed the company and was informed that although there were no gluten ingredients, they don’t test for gluten and can’t guarantee that it doesn’t contain gluten from the manufacturing process. I stopped it immediately, which was difficult as my gastritis was awful. My symptoms began to improve slightly as they do each day. Yesterday my reflux type symptoms were less too. But it is a slow road to recovery this time as I have said. I have been ill now for 2 months and 2 and a half weeks into recovery. 
I am in the UK and find it hard to understand how medication can hide ingredients nowadays, with all allergies and intolerances. I react to soy too like gluten and I ask my gp for meds that are soy and gluten free. They then say to ask the pharmacist. I ask the pharmacist who tells me that it is for me to read the ingredients on the information leaflet. Where do you go from there? Also I ask the gp for a prescription to pay and get compounded meds privately and they refuse. I don’t understand why the pharmaceutical industry are not made to list the top allergens and all ingredients simply and transparently. 
But thank you again for your advice. I feel like I have lost the last few months. Literally too with the brain fog and memory loss. You’re so right about the feeling of helplessness. Onwards and upwards! 

[FayeBr]

And just as an afterthought, I would love to ask a question that may sound strange. But when I have symptoms, I never have more than one at one time. The inflammation seems to move around my body. Such as a migraine and then it moves to my throat or earache. Brain fog seems to be consistent but it’s almost like I picture the bad cells travelling through my body and stopping off along the way. For instance, this error was predominantly in my stomach with gastritis and also bloating, abdominal pain and GI symptoms for a long while. And then as I stopped the source and started healing, my gastritis has now started to get better (certainly not fully) but all of a sudden the other symptoms I usually suffer from have bombarded me. It’s like the inflammation has started to move on. Maybe I’m just imagining all this. Very possible. But just my experience. I have nightmares about gluten now. The fear is real! 

[knitty kitty]

Oh, @FayeBr, you poort thing! 

I've had episodes similar to yours, taking something that is supposed to help, but makes symptoms worse.  You're not alone.  Hold tight, we'll get you through this.

Acid reflux can be caused by not enough digestive enzymes, contrary to the assumption that overproduction of digestive acids causes acid reflux.  The cells that make digestive juices keep pumping out what little they can make even after a meal.  They need niacin vitamin B 3 and thiamine B 1 to make sufficient amounts of digestive juices and secrete them at the proper time. 

An ingredient in Gaviscon, sodium alginate, forms a gel on the stomach and intestinal walls.  This also can interfere with absorption of nutrients.  We can't digest it, but Sodium alginate can be fermented by intestinal bacteria resulting in gas and bloating.  It also pulls water into the digestive system.  Remember to stay hydrated.

The B Complex vitamins can run low within six weeks if food is not digested properly and if diarrhea occurs.  Are you taking a B Complex vitamin supplement?   I've found taking a B Complex and Benfotiamine, a form of thiamine that promotes intestinal healing, very helpful.  Thiamine also has antibacterial and antifungal properties which can help control SIBO and Candida, and promotes beneficial bacteria.

Things I do to avoid acid reflux symptoms include: 

Sit up straight, both feet on the floor, when eating so food can drop straight down to the stomach.  Sitting hunched over curves the esophagus and food can get stuck on the walls of the esophagus causing irritation.  

After eating, do heel thumps.  Lift up on toes, (hold on to chair or counter for stability) and gently drop down on your heels with a gentle thump.  This helps get trapped air to come up, much like burping a baby.  Careful if you have osteoporosis or back pain.  Also, going for a short after dinner walk will help.  Gravity works!

Drink something warm.  I drink a warm cup of plain hot water or tea after meals.  Oolong tea is great.  Oolong tea contains an amino acid theanine that helps relax the intestines (and the brain), and has anti-inflammatory properties.  Do be careful as too much in some people can cause diarrhea.  Adding a whole clove or two to regular black tea soothes the intestines as well.  Cloves contain eugenol oil that is anti-inflammatory and calms the digestive tract.

Lean to the left after meals.  Our stomachs empty to the left.  Leaning left encourages food to drain out of the stomach, so less chance of reflux and gastroparesis (where food just sits there).  I prop up on a couple of pillows so I'm leaning about forty-five degrees to the left while I enjoy my cup of tea.  

Practice abdominal breathing.  I know when I feel uncomfortable or in pain, I tend to breathe shallowly, just my upper ribcage moves.  This is part of the fight or flight response to pain.  When we breathe abdominally, our diaphragm acts as a plunger helping to churn and move our food through the digestive tract.  We should be able to see our belly button area stick out (like a pregnant belly) then contract back towards our back bone.  Do this standing or sitting, or while leaning to the left.  I have had gastroparesis and this abdominal breathing really helps.  Abdominal breathing also helps while falling asleep.  

I take my Benfotiamine and B Complex at the beginning of a meal.  After the meal, I take a magnesium supplement like magnesium threonate or magnesium chelate.  Magnesium works with thiamine (Benfotiamine) to make important enzymes.  Magnesium coats the walls of the digestive tract and can reduce that reflux, too.  Calcium supplements will coat the intestinal walls, too, so I alternate between magnesium and calcium after meals.

We can run low on thiamine within twenty-one days.  Symptoms of low thiamine include:  "bedridden with fatigue and aches/pains,  gastritis, abdominal pain and GI problems, brain fog, mental health symptoms, pins and needles, migraines".  I've been here.  This is called Gastrointestinal Beriberi, and is under recognized by doctors.  I suffered the same symptoms, but after taking Benfotiamine, my symptoms resolved fairly quickly.  Benfotiamine is available OTC.   

It's very frustrating that doctors are not as knowledgeable about vitamin deficiency symptoms.  Have you had your Vitamin D level checked?  Vitamin D can help lower inflammation and regulate the immune system.  

I hope these suggestions help.  I almost forgot one of my favorites, a hot water bottle to go on the tummy.  The weight of it helps.  

Do keep us posted on your recovery!

[Scott Adams]

10 hours ago, FayeBr said:

Thank you for your reassurance. It can sometimes feel very lonely with this disease and a constant battle. The product was Gaviscon Advance Aniseed which I was taking every day due to having gastritis from my gluten exposure. It states on the leaflet that it does not contain gluten. So I thought I was safe. But my symptoms were getting worse each day, causing me to take more gaviscon.

You are right, it does say that it doesn't contain gluten:
https://www.gaviscon.ie/products/gaviscon-advance-aniseed-flavor-liquid/
 

Quote

This product does not contain sugar or gluten.

Is there any chance you have a sensitivity to one of its many other ingredients?

Quote

Active Ingredients

Each 10 ml oral suspension contains 1000 mg sodium alginate and 200 mg potassium hydrogen carbonate.

The other ingredients are calcium carbonate, carbomer, methyl (E218) and propyl (E216) parahydroxybenzoates, sodium saccharin, sodium hydroxide, aniseed flavour derived from fennel and purified water.

This product does not contain sugar or gluten.

 

[FayeBr]

[FayeBr]

I would say from experience that I am definitely reacting to gluten. I do also react to soy but slightly differently, shorter time period with tell tale signs. I appreciate all of your advice Knitty Kitty. I am low on Vitamin D and I have asked my gp about Thiamine who advised that we don’t do blood tests for that in the UK. I also feel like my thyroxine meds aren’t working correctly now too. Perhaps with the damage? But I will take your advice seriously as you live and learn so much. We all know our own bodies and we all have our own symptoms and experiences. 
I am on a waiting list for an Ataxia specialist here in the UK. I must have Been Celiac long before being diagnosed as they diagnosed me with MS in 2004 and neurologist is now saying it has been Ataxia from gluten all along. 
It has been a learning curve for me and it is so surprising how little is actually known about this by neurologists and other medical professionals, with some unable to even pronounce it correctly. I have studied hard over the 4 years and written to experts to gain knowledge. Having said that, this site is great to find comfort in fellow Celiacs and to feel like you’re not the only one 😊

[knitty kitty]

@FayeBr,

Yes, blood tests for thiamine are notoriously inaccurate. Thiamine works inside cells.  The blood stream is a transport system, not an accurate measure of the amount of usable thiamine inside cells.  The best way to see if you're in need of thiamine, according to the World Health Organization, is to take thiamine for a while and look for health improvement.  

The thyroid is one of the biggest users of thiamine along with the brain and the pancreas.  Thiamine improves the fatigue in hypothyroidism and helps the thyroid function.  Thiamine helps the pancreas produce digestive enzymes and insulin.  Yes, low thiamine can even cause altered thinking, forgetfulness, depression, anxiety, panic attacks, migraines, poor judgement, and brain fog.  Low thiamine causes white spots in the brain in specific areas.  

Yes, low thiamine can cause symptoms similar to MS.  Abnormalities in muscle fiber contractions can be very similar in both MS and low thiamine. 

Thiamine is water soluble and nontoxic.  There's no toxicity upper limit.  If not needed, the kidneys excrete it easily.  

Some Celiac people make tTg 6 antibodies which attack the brain resulting in Ataxia symptoms.    Remember blood tests for Celiac?  Those measure tTg2 antibodies.  TTg 6 antibodies are also found in people with Alzheimer's and Parkinson's diseases, although they don't have Celiac disease.  

P.S. I struggled along with low thiamine for years.  I have had great health improvement taking Benfotiamine. 

Edited September 25 by knitty kitty
Added Post Script

[Scott Adams]

Talk about sowing confusion...why does Gaviscon's website say:

Quote

This product does not contain sugar or gluten.

and when you ask them about this directly they reply with a letter saying that their product might contain gluten? This seems like false advertising to me! @FayeBr you may very well be reacting to gluten in the product, given their terrible response.

[FayeBr]

I have this so many times with products. Companies state online that their items are gluten free and then when I ask in an email, they always respond with ‘we can’t guarantee that it is, as we don’t test for gluten’ I had one recently with a bone broth that I enquired about. And dioralyte. I will include their advert and then their reply. It is so frustrating. More than frustrating. How are we meant to navigate the minefield without transparency? Thankfully I very rarely get Glutened. It is mostly soy that is the worst thing for me to avert. I react to it similarly but not for as long and mainly pain all over. And we know how that hides in things. I am still suffering and today was a back pain day with the usual gut and gastro symptoms. Aren’t we all lucky.  Still, we live to fight another day! 😊