Post Gluten-Free Symptom Questions

[kwagner614]

I was diagnosed with celiac disease back in May and have been on a gluten-free diet since.  My diagnosis was a bit of a shock to me (and my doctor).  I was having loose and discolored stools after the birth of my child with other symptoms like tingling hands and feet, fatigue and “brain fog”.  My PCP referred me to a Gastroenterologist.  He did blood test and the anti-body test came back only slightly elevated.  A biopsy was done, and celiac was confirmed even though to the doctor’s naked eye, all looked normal.  Mixed in with that, my thyroid levels were off and meds needed to be adjusted.

Fast Forward to today.  My thyroid levels are in the normal range, so all looks good there.  I am still having fatigue, dizziness, brain fog and occasional tingling sensations in my hands and feet.  After reading some posts on here, I had my PCP check my vitamin levels.  All looked “normal” except for a slightly elevated magnesium level.  I am having that rechecked in a few weeks since I may have been dehydrated when I got the bloodwork done.  So all that being said...is it normal to still have these symptoms after 1.5 months of gluten-free?  If yes, how long does it take them to subside and return to normal?  I feel like a bit of a mess and feel so awful for my husband who has taken on a large responsibility with our 9 month old baby because I can’t seem to function normally.  Any advice or encouragement would be greatly appreciated!

[cristiana]

Hello kwagner

Welcome to the forum, and congratulations on the birth of your baby last year.  

Reading your symptoms I could have been reading about myself (apart from the fact that my children were 7 and 9 at the time of my diagnosis).   It must be tough feeling out of sorts with a young baby to care for, I really hope you begin to feel a lot better soon. 

You will see by reading various people's experiences on this forum that some make very quick recoveries, others take a good while longer:  we're all different and heal at different rates.  Just make sure you are as gluten free as you can be.    You should find this thread useful, if you haven't already seen it.

 

I remember way back reading on this site that neuro/non-gastro symptoms can take longest to heal.   I found this to be true.    I can remember spending hours and hours on this forum wondering if my tingling symptoms and brain fog would ever go.   But they did!  (Except for when gluten sneaks in again - they do make a reappearance from time to time!)   

You mentioned your vitamin levels are OK.  Was your B12 much above the low normal level?  You may wish to supplement that if it is  just above normal as that can be helpful, my levels were just above the low cut off point and my doctor said nothing; my nutritionalist noticed, though, and I found B12 sublingual tabs really made a difference.  Also, low iron can bring about tingling too.  Have your ferritin levels been checked?   On iron, however, do take care - too much iron can also cause trouble, if you do supplement you must do so under medical supervision.

Do come back to us if you have any other questions.

Cristiana

 

 

Edited June 28, 2021 by cristiana

[trents]

I concur with what cristiana said and would add that to attain a truly gluten free lifestyle generally involves quite a learning curve. It took me about a year and a half to get a good handle on how and where gluten is tucked away in the food supply, in meds and supplements and even in grooming and hygiene products. It is common for those just beginning the journey to be unaware of things like cross contamination and the smaller amounts of gluten that can be contained in meds and supplements, for instance. But these minor exposures can prevent or delay healing of the gut. Even something like kissing after your partner has consumed gluten can generate a gluten reaction in some people. Using the same knives and serving utensils for gluten containing foods as you don gluten free foods when preparing and serving food can cause problems. And eating out is generally problematic as eatery kitchen staff are often not careful to avoid cross contamination back in the kitchen.

Edited June 28, 2021 by trents

[Scott Adams]

Welcome to the forum. For me it wasn't until I began taking magnesium citrate and bonfotimine (fat soluble thiamine) that some of my tingling and neurological issues improved (after 25 years!), so do pursue possible vitamin/mineral deficiencies as @cristiana mentioned. Interestingly B1 isn't one of the common deficiencies mentioned with celiac disease, but my position on it now is that all celiacs should be doing a B-Complex and taking bonfotimine (it's important to take it with magnesium citrate). Not to scare you, but even though I run this site and have had access to much information, I'm still learning how to deal with some of the issues that, for a very long time, I didn't realize were related to celiac disease (in my case it was chronic neck pain issues, and possibly restless leg syndrome and sleep apnea).