Patience Required

[Megawisdumb]

From my perspective, it seems most recently diagnosed Celiacs follow a similar path that involves progressive recovery efforts.  Mine seems like an inverse path so far.  I was diagnosed 10 weeks ago and started strict gluten-free on same day.  At that time my tTG IgA Ab was 30.2 and Gliadin Ab, IgA was 43.9. I feel worse today than any day prior to Celiac.  I never had gut pains until I started gluten-free.  I never had significant joint pains and fatigue until I started gluten-free.  My endoscopy Celiac diagnosis started with a confirmed dermatitis herpetiformis (DH) skin rash that continues to this day. It has subsided some on my back but legs and head are 10x poison ivy level but I’ve learned to cope with the itch.  The fatigue & joint pain is a game changer as I am an active person and continue to be but it’s a struggle.  I’ve read it can take many months to start to feel better even if you are strictly adhering to all the new rules.  I learned last night with our first cold snap that electric blankets and DH are like oil and vinegar.  Woke up at 2am with what can only be described as a gasoline fire without the flames happening on both legs.  I do know somewhere down the road this should change but for those of us with stout gliadin in the blood it may take awhile to flush it out.  Patience is required, follow the path.

[cnazrael89]

12 hours ago, Megawisdumb said:

I feel worse today than any day prior to Celiac.  I never had gut pains until I started gluten-free.  I never had significant joint pains and fatigue until I started gluten-free. 

I can relate to you on this on some levels. I was recently diagnosed with Celiac disease via endoscopy/biopsy and I have felt weird things in my body that I had never felt before going gluten free. I already had the joint aches/headaches/fatigue, etc etc but since going gluten free I have had some weird belly pains that I never experienced before (I keep telling myself it is my intestines healing and the inflammation calming down haha; probably not true but meh, maybe). I've been trying my best to eat whole food/single ingredient food only for now to give my gut time to heal. It is difficult and has required more time in the kitchen than I have ever spent prior to this but I know it is going to be worth it when I feel better. I had some rashes off and on throughout the years and thought I was going to get a couple of different exacerbations since going gluten free but it ended up subsiding before it got too bad. I do hope your DH calms down and you start to feel better, sooner than later. Have you had your labs checked for nutritional deficiencies since being diagnosed with Celiac? I have started supplementation to help correct nutritional deficiency as directed by my GI provider and have begun to feel quite a bit better in a relatively quick amount of time (some things are better than others and it still waxes/wanes a lot depending on the day). Take care!

[Megawisdumb]

Maybe I'm just a slow healer.    I have had labs checked and am good on all levels but did add a few supplements Scott has recommended on his forum.  I live on a farm and always have many projects on the horizon so this fatigue element is certainly a challenge.  I tell my sons...I became my grandfather in less than a month.  I've always been a meat and potatoes guy so the diet changes were not drastic for me and many of my local stores have gluten-free sections and an amazon vendor entitled "Gluten Free Sensations" makes cinnamon rolls that taste better than any bakery I know but I do miss pop-tarts and beer.  Once the DH subsides a tad I think it will be much easier.  We are all one big unique chemical reaction so I'm anticipating a few more curve balls before this ride normalizes out.     

[knitty kitty]

@Megawisdumb,

DH is made worse when we've been exposed to iodide, as in iodized salt, sea salt, seafood, kelp, algae, nori, and dairy.  Yes, dairy has lots of iodide in it.  

I switched to Pink Himalayan salt and eliminated dairy, and my DH has gotten much better.

I followed the Autoimmune Protocol Diet which has been shown to promote healing in the intestines.  

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

The AIP diet eliminates all grains and nightshades (potatoes, tomatoes, eggplant, and peppers).  Nightshades have glycoalkaloids that cause leaky gut syndrome.  Supplementing with Benfotiamine, a form of Thiamine Vitamin B 1, helps the intestines heal as well.  

Vitamin D supplements will help calm your immune system down.  Hope that's one of the supplements you're taking.  

Keep us posted on your progress!

[cnazrael89]

21 hours ago, Megawisdumb said:

I tell my sons...I became my grandfather in less than a month.

Funny, my wife and I have been making comments like this too. 33 year old male that now has osteoporosis and abnormally fatigued for my age. I had/have (improving) intense irritability, "short fuse" as I was getting sicker, so now we just say I'm a crotchety old man. I am generally a go getter who enjoys staying busy with little home projects and such but haven't had the motivation/energy to do more than work my fulltime job and help with the kids. Even that right there does me in every single day just doing the bare minimum. Things have been improving slightly for me though as I have been supplementing with Benfotiamine, B complex, Vitamin D, Magnesium Glycinate, among other things recommended by my GI for deficiencies/osteoporosis. Good luck on your continued healing journey.

[Rogol72]

Carrageenan is a food additive derived from seaweed, used as an emulsifier. It may also be a factor to consider for DH flares. It's used in dairy and dairy milk alternatives.

[Rogol72]

10 hours ago, cnazrael89 said:

Funny, my wife and I have been making comments like this too. 33 year old male that now has osteoporosis and abnormally fatigued for my age. I had/have (improving) intense irritability, "short fuse" as I was getting sicker, so now we just say I'm a crotchety old man. I am generally a go getter who enjoys staying busy with little home projects and such but haven't had the motivation/energy to do more than work my fulltime job and help with the kids. Even that right there does me in every single day just doing the bare minimum. Things have been improving slightly for me though as I have been supplementing with Benfotiamine, B complex, Vitamin D, Magnesium Glycinate, among other things recommended by my GI for deficiencies/osteoporosis. Good luck on your continued healing journey.

@cnazrael89,

Have you been referred to a specialist for your osteoporosis? If you don't mind me asking, what supplements beyond the obvious were recommend by your GI for osteoporosis. I'm curious because I have osteopenia and want to address it with supplements and exercise.

[cnazrael89]

@Rogol72

So far I was told to schedule a follow up with my primary care physician to "discuss medication options" but i don't know yet if i want the medication route or not...trying to get insight on what is the best plan of attack. I was deficient in copper which I saw can lead to osteoporosis and they did tell me to start supplementation of copper daily, which I've been doing and told me to do the calcium 1000mg and vitamin D (I've been doing 10,000). 

[Rogol72]

Thank you @cnazrael89. I've done a bunch of research about reversing osteopenia/osteoporosis naturally. I believe it can be done with supplementation, diet beyond gluten-free and strength exercise. For example, my hips hurt when I eat too much citrus ... I think it's the acidity. I don't fancy pharmaceuticals.

I've bookmarked some interesting articles I've found, I'll send them to you if you wish to look through them. Two heads working on this problem might be better than one.

[cnazrael89]

@Rogol72

Wow, that would be awesome if you would send me the things you've bookmarked. I did read an interesting thing the other day on "UpToDate" about how young adults that get diagnosed with Celiac disease and have osteoporosis at diagnosis oftentimes can improve bone density simply by being gluten free compliant, taking calcium/vitamin D/correcting other deficiencies and doing weight bearing exercise...I want to discuss this with my doctor on the 7th of December to see if I can try this method for a period of time and get a repeat DEXA in like a year post diagnosis to see if there is improvement...please do send me the things you've been reading! I'd be interested in looking through it!