Brain fog and extreme tiredness have returned

[Keight]

Hi all. I have spent the last few days trawling through the forum for reassurance. I think what I am needing is some hand holding. 

It has been 3 months since diagnosis. I have eaten out only 5 times since then, and only gluten-free dedicated/accredited places. I am super careful at home with CCing. 

I have a nutritionist working with me and he is left scratching his head at why I have suddenly felt worse in the last three weeks. My diet is no-grain, no-dairy, no-fruit, no-sugar. I eat gluten-free lentils, organic meats, WPI, olive oil, ghee, butter, coconut oil, all manner of organic veg and salad veg, organic sweet potato (purple outside, white inside) and lactose free kefir. My body is very quick to let me know if something disagrees! I now know oxalates high in veg are a no-go. I am taking all the vitamins etc I am deficient in. 

I was feeling so much better for a while. Being sensible at the gym too. Then three weeks ago, I just crashed. I cannot summons the energy to do more than work. I come home, make dinner and crash. From Fri night til Sun night, I am doing nothing but rest. No gym, which is really bothering me.

I am getting sweaty at work when I exert myself at all, my blood pressure starts at 104/68 at 6am, and by 6pm, it is 90/62. My heart beat is 68 at 6am, and 60 by 6pm. I am also getting hypoglycaemia quite a bit as well. 

I am going to the dr tomorrow. I serioysly have no idea how to explain all this. She is reasonably astute, as she has run thyroid tests already. I am wondering what tests I ask for, or let her guide it all. 

I KNOW it takes a while to heal, but this sudden set back is bewildering. I am a truck mechanic and my job is heavy going. My work place is giving me less taxing things to do, but there is only so long the team can carry me. I am also considering finding a new line of work. My health is consuming me and I have no way to assure my work place to keep holding onto hope that I will improve. 

So many things ARE improving. My arthritic big toes have more flexibility and mobility, my migraines have disappeared, no hay fever AT ALL, bloat is dying off, I am leaning out, I do not drink coffee at all (was 3 espressos a day!), no cravings for any food at all. 

I get some nausea after about 3pm. I am not actually hungry, just depleted of energy. And I am getting irritable with some work mates. I have lost interest in my hobbies. 

My nutritionist is pushing me to see my GP. He is really worried I have something else underlying this. 

Sorry about it being rambling etc, I simply have nowhere else to share my anxiety and fears. 

[Ennis-TX]

Honestly, sounds like when I get my macros wrong or under eat, technically I am supposed to eat 1800 to cut on my old 140lb build, and sometimes while bulking or matinenice period I find at the end of the day I am under that in my fitbit app after entering my meals then the workouts and walking throw me several thousand calories off.  I am also a keto dieter with a emphasis on protein due to working out (sometimes 30-40% of my intake can be protein) when I hit the higher end of protein and  not enough fat (for me fat is fuel for you carbs probably are so you should look at carbs) I bog down and feel tired/fogged/drugged. I sometimes do not eat enough of certain nutrients or balance right or a bad reaction to something else leaves me with digestion issues so I have to supplement as I do not get enough nutrients from my food. 
Do you keep a food diary? IS there anything new, newly brought back to the rotation or perhaps something newly bought?  A new issue with a food allergy or a intolerance is not uncommon as your healing as the body starts looking at things other then gluten...you can see my list in my signature and it might just be temporary. I have also ran into cc issues with some odd things in stores (HEB grocery store in the next town over has a open air bakery where they do the dough kneading on a display table right next to the open fresh veggie displays and it leads them to get a nice flour dusting) Or a manufacture suddenly changing ingredients (My last one was a safe chip that changed over one ingredient to a corn based one which I am allergic to, before that another company moved to a bigger yet shared facility and was no longer gluten free) so I had the saying always read the labels drilled into me.

Or it could be something simple such as bug or your body is fighting well and just a bit tired (been this way being around some sick kids, nothing like they had but I bogged down).

[Keight]

Thanks Ennis_TX. I saw the dr today and she wants to do fasting blood glucose, another iron level and for me to record my blood pressure twice a day for a week. 

I am trying to chill and let my body do what it must. It is so much smarter than me. 

[cyclinglady]

Ennis gave great advice.  

When your doctor measures your iron, be sure she checks ferritin (iron stores).  How you process iron might be just fine on a lab report, but you could have low iron stores which can slow you down.  That happened to me.    Also have her check you for thyroid antibodies since you have celiac disease (commonly linked).    Just measuring TSH only tells you that you thyroid is functioning enough maybe to not need hormone replacement, but you could have symptoms from an autoimmune flare-up.  Get a complete thyroid panel too.  It tells more of the story.  Autoimmune thyroiditis can flare up for  no known reason (at least for me) and cause symptoms.  It is possible to swing from hyper to hypo fast!   Other autoimmune disorders could be brewing.  I found my third autoimmune disorder, autoimmune gastritis.  It ebbs and flows in terms of symptoms and how I feel.  I just call those a bad day and move on. 

How do you know you were hypoglycemic?  Do you test with a meter?  Type 1 diabetes is another strongly linked issue with celiac disease as is POTS:

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

But it is critical to make sure you have nothing else going on.  Glad you went to the doctor.  Not everything is due to celiac disease though since you are newly diagnosed, it is the place to really start analyzing for dietary mistakes, additional food intolerances or allowing time to heal.  Listen to your body and rest.  

[Lindquist]

I had same problems 98/66 and i got b12 defiency and folate. That i eat everyday caused by my celiac. 

[Scott Adams]

Welcome to the forum @Lindquist! This thread is a few years old, so the OP may not reply to your post.

Are you also taking a general B complex that includes other B vitamins? You may have additional vitamin and mineral deficiencies as well. How long have you been gluten-free?

[Lindquist]

My doctor say i have only IBS but when i eat gluten i get all this symptoms i end eating gluten in 2019 when i lost weight from 120 kilo to 67 kilo i also got b12 defiency and folate. I think i have vitamin D defiency too. I did do a biopsy and they find that i have something called for Duodenum a inflammation but they couldn't say what it was so they say it's IBS but it's not IBS from my side it's gluten my mom hade celiac disease. When i had get something with gluten i get migranes for 3 days i swet alot in my knees when i sleep i get pain in my stomach feels something eating me inside. I vomit too. Feel like i have a influensa or something. After 1 week i can eat normal again. 

[trents]

34 minutes ago, Lindquist said:

My doctor say i have only IBS but when i eat gluten i get all this symptoms i end eating gluten in 2019 when i lost weight from 120 kilo to 67 kilo i also got b12 defiency and folate. I think i have vitamin D defiency too. I did do a biopsy and they find that i have something called for Duodenum a inflammation but they couldn't say what it was so they say it's IBS but it's not IBS from my side it's gluten my mom hade celiac disease. When i had get something with gluten i get migranes for 3 days i swet alot in my knees when i sleep i get pain in my stomach feels something eating me inside. I vomit too. Feel like i have a influensa or something. After 1 week i can eat normal again. 

If your mom had celiac disease there is a 44% chance you have it and your symptoms certainly suggest that. Have you been tested for celiac disease?

[Scott Adams]

It sounds like @Lindquist may have had an endoscopy for celiac disease, but the only way to be certain would be for you to confirm this. Also, to be screened for celiac disease using a blood test you would need to eat gluten daily, about two slices of bread, for at least 6-8 weeks. To me it certainly sounds like you may have undiagnosed celiac disease, especially if your mother has it.

[trents]

29 minutes ago, Scott Adams said:

It sounds like @Lindquist may have had an endoscopy for celiac disease, but the only way to be certain would be for you to confirm this. Also, to be screened for celiac disease using a blood test you would need to eat gluten daily, about two slices of bread, for at least 6-8 weeks. To me it certainly sounds like you may have undiagnosed celiac disease, especially if your mother has it.

Yes, I saw that in his post but he doesn't say they were looking for celiac disease evidence when they did the biopsy.

[Lindquist]

11 hours ago, Scott Adams said:

It sounds like @Lindquist may have had an endoscopy for celiac disease, but the only way to be certain would be for you to confirm this. Also, to be screened for celiac disease using a blood test you would need to eat gluten daily, about two slices of bread, for at least 6-8 weeks. To me it certainly sounds like you may have undiagnosed celiac disease, especially if your mother has it.

No chance i will eat bread for 6-8 weeks and have a inflammation for 3-12 month. 

 

[trents]

8 hours ago, Lindquist said:

No chance i will eat bread for 6-8 weeks and have a inflammation for 3-12 month. 

I get that and respect your decision. IMO, you should consider yourself to have celiac disease and get serious about eating gluten free. There is a real learning curve involved.

[Scott Adams]

Yes, I agree with @trents, and fully understand your decision not to do a gluten challenge.

[Lindquist]

I did do a hair analyze test and that show that i am also is intolerance to yeast in cereal and grain products. So could yeast intolerance have a connection to gluten also? When i did do a allergy test it show i am also allergy to Mold.

[Scott Adams]

I've never heard of a hair analysis test to determine allergies or food sensitivities, so I can't speak to that. Can you share more about this test? I'm a bit skeptical here, but it's certainly possible that there is a newer technology or medical test that I'm not aware of.

[skydvr18]

My first day here, first full day after being diagnosed with celiac disease, and I've see 2 other people who, like myself, have adrenal insufficiency.  I remember it made me extremely exhausted, and while the hydrocortisone helped, I continued to get worse - to where I am today, 99% of my time in bed, staring at my to-do list, strategizing how to get things done ("shower:  with all my effort, get out clean clothes and towels").  Can somebody share how long it took them on a strict gluten free diet to realize "hey, I feel better"?  For 7 years, I've gotten worse and worse - going from over 200 pounds to my current weight of 130 pounds; osteopenic; anemic; dentures at 40.  Lack of energy is my biggest problem - I'm lucky if I am able to shower more than once a week; run out of clean clothes, re-wear the ones in the laundry basket; on a really good day, drive to Walmart for a grocery pickup.  I know it will take a while for my intestines to heal, but I've read about people who started to feel better days after starting the gluten free diet.  Personal experiences?  Thanks for celiac.com and posting - helps knowing I'm not alone.

[trents]

21 minutes ago, skydvr18 said:

My first day here, first full day after being diagnosed with celiac disease, and I've see 2 other people who, like myself, have adrenal insufficiency.  I remember it made me extremely exhausted, and while the hydrocortisone helped, I continued to get worse - to where I am today, 99% of my time in bed, staring at my to-do list, strategizing how to get things done ("shower:  with all my effort, get out clean clothes and towels").  Can somebody share how long it took them on a strict gluten free diet to realize "hey, I feel better"?  For 7 years, I've gotten worse and worse - going from over 200 pounds to my current weight of 130 pounds; osteopenic; anemic; dentures at 40.  Lack of energy is my biggest problem - I'm lucky if I am able to shower more than once a week; run out of clean clothes, re-wear the ones in the laundry basket; on a really good day, drive to Walmart for a grocery pickup.  I know it will take a while for my intestines to heal, but I've read about people who started to feel better days after starting the gluten free diet.  Personal experiences?  Thanks for celiac.com and posting - helps knowing I'm not alone.

You probably also have vitamin and mineral deficiencies. I would suggest getting on a high potency multivitamin plus a high potency B-complex together with magnesium and D3. Damage the small bowel villi (the nutrient absorbing lining of the small bowel) causes this. Make sure all vitamins and supplements are gluten free. Costco's Nature Made line is a good choice.

Edited August 26, 2021 by trents

[Lindquist]

12 hours ago, Scott Adams said:

I've never heard of a hair analysis test to determine allergies or food sensitivities, so I can't speak to that. Can you share more about this test? I'm a bit skeptical here, but it's certainly possible that there is a newer technology or medical test that I'm not aware of.

Go here www.imupro.com testing for 270 food intolerances. Hair mineral analyze is good to see what mineral and vitamin you have defiency of. 

[Scott Adams]

It's an interesting approach for sure, but if possible I'd recommend that you get an old fashioned blood test from your doctor or a licensed medical lab for any vitamin or mineral deficiencies.