Feel like I’m starting over

[Scatterbrain]

Hello,

I was newly diagnosed in January of this year (2025).  Since then I have been strict about staying gluten free and only cooking at home.  I started feeling better in July while gradually resuming close to my normal routine of activities and athletics. September and October were extremely stressful due to a new home build being finished and moving.  My spouse and I take care of his mom who has advanced dementia and have been since 2021.  We did all the moving as well as get the other house on the market for the month of October.  Since earlier this month I feel like I did back in the early stages of my diagnosis.  Almost all of my symptoms have come back except for the bad abdominal issues.  I haven’t changed my diet or supplements since January and wonder if the stress has caused a set back?

Any thoughts are helpful.  Thanks

[cristiana]

Hello @Scatterbrain and welcome to the forum

I am sorry to hear you have had a return of your symptoms. 

My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having?

Cristiana

 

[trents]

Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.

[Scatterbrain]

Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell.

To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.

[Wheatwacked]

Hello @Scatterbrain,

Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.  

By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse. 

Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.  

• Difficulty walking.
• Loss of feeling (sensation) in hands and feet.
• Loss of muscle function or paralysis of the lower legs.
• Mental confusion.
• Pain.
• Speech difficulties.
• Strange eye movements (nystagmus)
• Tingling.

Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.

Quote

Did you know that some brands of drywall and compounds used to conceal drywall (“mudding” compounds) contain wheat? According to the Kansas Wheat Commission & Kansas Association of Wheat Growers, things like insulation, wood substitutes (such as plywood and pressed particleboard materials) and roofing materials may also contain gluten – so if you are highly sensitive, it may be best to have someone else handle these products for you.   https://ancientharvest.com/unexpected-sources-gluten-outside-kitchen/#:~:text=According to the Kansas Wheat,handle these products for you

 

[cristiana]

Hi @Scatterbrain

Thank you for your reply.  

Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right! 

• Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection.
• Jaw pain - stress.
• Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies.
• Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better.
• Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us.
• Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this.
• Insomnia - stress, menopause.

So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?

 

 

Edited November 21, 2025 by cristiana

[trents]

Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.

[knitty kitty]

@Scatterbrain,

What supplements are you taking?

I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.  

Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.  

Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  

[Scatterbrain]

I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.

[knitty kitty]

Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.  

Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.  

Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.  

We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.  

The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse.

"My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell."

I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.

 

A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial

https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/