I'm losing hope :(

[Voguishstorm]

Hello everyone!

I've been squatting this forum for while but never made an account or said anything. As most people, I'll try to give a complete picture since we all seem to take it so differently.

I am a 23 years old female University Student, on my 3rd year.

When I first started, I had to deal with a tremendous amount of stress. I believe this is what triggered celiac disease in me, but I could be wrong. It's just that I felt perfectly fine before that.

Here's the deal though: while I do have symptoms, NONE of them have to do with my digestive system, so it took a long time before I took a hint. At the end of my first year of University, I was super tired but everybody in my class was so I assumed it was normal. A month and a half into summer break, I realized resting should not take that long, so I went to see my doctor. She had me do lots of tests and found that my iron was very low (10). I took iron supplements and started my second year of University. Of course I started feeling better, I lost the constant migraine, near fainting weakness, things that were mainly associated with Iron deficiency. By December, my doc calls me to say my iron is golden, it's above average, "victory". While I felt better, I still didn't feel like a 22 year old should, so my doc met with me again. She said we should check me for celiac. At first I thought it wouldn't be it because I didn't get bloating, stomach pain, constipation...nothing. All I got was an iron deficiency -which is more a result than a symptom-.

Obviously, tests came back positive. I have Celiac Disease. That was in May of this year (2017). My gut is "moderately to severely" damaged. Knowing school would be no good in the state I was in, I did the most I could to start helping it. Webinaires, read about it, ask about it, get tips. While I did not have a vitamin D deficiency, my doctor still had me take some to make sure it doesn't happen. I was given probiotics, as well as some other stuff to support my whole body (my liver had stopped filtering things, thus my thyroid was starting to have a hard time too) My liver is now fine. Yay!

Back to school for my third year, it's not so bad, I know I'm far from being at my best but I'm forgiving towards myself.

Now my main problem is Brain Fog. Major Brain Fog. It's not always as intense but it's always there a little, and sometimes so bad that I can't do anything with my day. It's just...weird.

So I want to know. Is it normal if brain fog is still around after 5 months or so? Will it EVER go away or do I now have no future because it seriously hinders my schooling?

 

As for my diet...

Gluten-free since I was diagnosed. I got glutened a few times (hard to know since no direct symptoms) but eliminated those risks whenever I'd find out. I don't go out except that one restaurant where the cook is celiac or that other where they have a dedicated fryer. I didn't change all my cooking gear but gave it a thorough clean (the salary of a student doesn't really allow for much more). I live with my boyfriend and he is probably more maniac about cross-contamination than I am (he toasts his bread in the oven to keep the toaster gluten-free and will adamantly refuse to touch ANYTHING ELSE until he cleaned his hands).

I think I'm doing fairly well in that department, so assuming that I'm doing this right -or will progressively learn- is my life still going to consist of feeling like a dumb zombie? If not, any idea how long it could last?

[Ennis-TX]

The fog is part of the brain issue/nerve issues (Longest to heal) and is compounded by vitamin B absorption issues from a damaged gut. SO like me and the majority of supplementing is a near must. I use a 2 different liquid sublingual for mine. I take 1 tbsp each of Liquid Health brand Stress & Energy and Liquid Health Neurological Support, these seem to work wonders. Sounds like your doing pretty well, luck to find a chef at a restaurant with this disease, in my case I am a chef lol. Anyway, few budget things to help with come cookware as a college kid, nordicware. The brand makes all kinds of microwave cookware, I normally suggest it for people for eating while traveling as you can use the hotel microwave, and it makes a cheap cookware set as they have everything from steamers, rice cookers, grill plates, and omelette makers. PS if you get the circle grill plate get the splatter cover saves clean up. On the topic of clean up and safe prep, freezer paper is your best friend, Clean works surface and makes cleaning up after cooking super simple, just pick it up and dump crumbs etc into the trash or if CCed or too dirty just toss and it roll out a new sheet.

Your blessed to have such a supporting BF. Wish I had had someone so supportive of the diet. I laughed about the toast, funny but pretty soon he might stop stressing and just buy gluten free bread. >.> I sometimes toast my gluten-free bread myself with my culinary torch when in a hurry, so the oven is not the oddest way. Longer your gluten-free more it becomes second nature. I have brands I stick to, and I have a rotating cuisines where I try the same base dishes with different spices for a week then change cuisine to keep it mixed up. Between all the spices and extracts I have I will never get bored.
Your also lucky you got it before you started getting a bunch of intolerance and allergies. My profile has a nice list of mine and that's not even all of them. So look forward to life and that you can still eat many of the alternatives. The fog will go away but being a nerve related issues it is one of the slowest to heal and will slowly improve over the years.

[cyclinglady]

It sounds like you are doing everything right.   Consider asking your doctor for follow-up antibodies.  It is common to have this done three or six months after diagnosis and then annually.  

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It can time lots of time to heal.  Neurological issues typically take longer.  Most feel better after the first year.  So.....hang in there!  

[Voguishstorm]

Hello Ennis, thanks for your reply!

I suppose I forgot to mention I'm Canadian so I won't be able to find those specific products, though seeing what's in it does help.

I'll just throw out here what I'm still taking.

Thyro-support (Has L-Tyrosine, Iodine, Copper, Zinc, Selenium)
An extra Zinc supplement since my tissues have always taken long to heal (Has Zinc, Vitamin B1, B2, B3 and B6)
Vitamine D
Probiotics
Unbleached Lecithin (Just to help my liver I believe)
Omega-3
Just finished some powder I used to mix in with water which was "Intestinal Support Mix" -it was nasty- Had many things that are good for gut health.

I laughed at your culinary torch method. I thought of becoming a baker myself but I think I hate competition too much to handle it. Seems stressfull. You seem to have turned it around pretty well, your story is quite inspiring.
I am the oddest student you'll find --> I do not have a microwave. My kitchen would not have space for one I still appreciate your tips!

 

Cyclinglady, my doc wants my next bloodworks done in December

[Ennis-TX]

55 minutes ago, Voguishstorm said:

Hello Ennis, thanks for your reply!

I suppose I forgot to mention I'm Canadian so I won't be able to find those specific products, though seeing what's in it does help.

I'll just throw out here what I'm still taking.

Thyro-support (Has L-Tyrosine, Iodine, Copper, Zinc, Selenium)
An extra Zinc supplement since my tissues have always taken long to heal (Has Zinc, Vitamin B1, B2, B3 and B6)
Vitamine D
Probiotics
Unbleached Lecithin (Just to help my liver I believe)
Omega-3
Just finished some powder I used to mix in with water which was "Intestinal Support Mix" -it was nasty- Had many things that are good for gut health.

I laughed at your culinary torch method. I thought of becoming a baker myself but I think I hate competition too much to handle it. Seems stressfull. You seem to have turned it around pretty well, your story is quite inspiring.
I am the oddest student you'll find --> I do not have a microwave. My kitchen would not have space for one I still appreciate your tips!

 

Cyclinglady, my doc wants my next bloodworks done in December

Yeah I am in a small town and the only gluten free baker in it, only have 3 other celiac regulars, otherwise a few health nuts, and my keto bread I came out with last month took off with a group of diabetics. my competition is gluten bakers and old ladies at farmers markets. I mean me vs someone that looks like a grandma...everyone loves grandmas cookies so I am normally overlooked unless people want gluten free. >.> Long hair male that looks like a hippy and most assume I do not know how to cook lol.
Liquid Health products are on Lucky Vitamin Ships to Canada and you can find them on amazon......They ship internationally. Oh and pumpkin seed protein is high in zinc, iron, magnesium etc. and great for blancing the body. Jarrow has a good one also on Luckyvitamin.com
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[Jmg]

Hello and welcome

11 hours ago, Voguishstorm said:

Now my main problem is Brain Fog. Major Brain Fog. It's not always as intense but it's always there a little, and sometimes so bad that I can't do anything with my day. It's just...weird.

So I want to know. Is it normal if brain fog is still around after 5 months or so? Will it EVER go away or do I now have no future because it seriously hinders my schooling?

First off, at 5 months in you still just about qualify for newbie status. So review the thread just in case, though it sounds like you're on the right track. 

I'm going to differ from Ennis slightly, although he knows his stuff. For me, brain fog initially lifted quite quickly. 

Now I'll preface this by saying that I know what a pain the gluten-free diet can be, especially if you're at uni and I wouldn't start saying you should exclude anything further if there wasn't a good reason! So having said that...

Are you eating dairy? A lot of celiacs don't do well with it due to the intestinal damage. They lack the enzyme to digest lactose properly. However, I had a negative endoscopy so thought it would be fine to have diary, but I've since found out that my dairy issues are primarily around casein, the milk protein. This can go hand in hand with gluten issues, so that may be something to investigate. A food diary would help there, along with maybe a trial exclusion and if its not dairy it could still be other food groups. 

Point being casein can cause brain fog and it may be that in removing one irritant you've exposed another? 

So, my suggestion, food diary, eat clean and simple and see how your symptoms respond to a period off dairy...

Best of luck

Matt

[Voguishstorm]

Hello Matt and thanks for your reply!

I did not completely eliminate dairy though I did tone it down quite a bit. I found out that if I do not have meat/animal product at least once in my day, I end up having hunger pains like I've never had before. Also, since I usually wake up with brain fog, it's hard to associate it with any foods. Now that you make me mention it, it's most likely linked to my thyroid more than my diet. I wake up tired often, and sleep infinitely without any improvement. And then sleeping so much, sometimes there is around 16 hours between yesterday's dinner and today's breakfast. That can't help! It was never important before, but I suppose that now, I really should watch out for my sleep and eat cycles.