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I Swear I Have Celiac Disease...but....

ktnhsv

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mushroom Proficient
mushroom
Posted
There are specific tests , I just have no insurance.

I thought about D deficiency before, but take a multi with 400IU in it. Do people usually take more?

Yes, if you are Vitamin D deficient, 400 IU will barely give you enough gas to get to the next gas station. :P That is a maintenance dose for those without deficiency. I was taking 50,000 IU weekly for two months, and then every month with 1,000 IU daily as well, until I got back up to snuff.

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ktnhsv Newbie
ktnhsv
Posted
  • Author
Yes, if you are Vitamin D deficient, 400 IU will barely give you enough gas to get to the next gas station. :P That is a maintenance dose for those without deficiency. I was taking 50,000 IU weekly for two months, and then every month with 1,000 IU daily as well, until I got back up to snuff.

What are the deficient in D symptoms?

ktnhsv Newbie
ktnhsv
Posted
  • Author

I'm on my first day of wheat free.....and this is TERRIBLE. :(

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm on my first day of wheat free.....and this is TERRIBLE. :(

Tell us what is terrible and we can help. If you are feeling down be aware that some of us are addicted to gluten and this will pass, as long as you don't cheat. If your having trouble because you spent 3 hours in a store reading labels, skip the processed food for a bit. Get whole unprocessed foods and if cooking is an issue let us know and we can guide you. Hang in there it is hard at first but if it helps your issues it is worth it.

ktnhsv Newbie
ktnhsv
Posted
  • Author
Tell us what is terrible and we can help. If you are feeling down be aware that some of us are addicted to gluten and this will pass, as long as you don't cheat. If your having trouble because you spent 3 hours in a store reading labels, skip the processed food for a bit. Get whole unprocessed foods and if cooking is an issue let us know and we can guide you. Hang in there it is hard at first but if it helps your issues it is worth it.

Terrible meaning-I want wheat! I want my bad food! I feel flu-like. I've never eaten this healthy. It's very strange!

ktnhsv Newbie
ktnhsv
Posted
  • Author

4 days of wheat/gluten free. My Eczema is 90% better already, but I'm still having loads of anxiety, dizziness, lightheadnesd, and severe fatigue. This is scaring me. :( I also can't find a good multivitamin that is easy to swallow

or chewable. Please don't suggest I see a doctor, I have no insurance and 5 kids.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

It's called withdrawal. You can do this! You have improved so much just keep going. You already have your answer you were looking for in your first post.

Remember going gluten free does not mean you have to buy expensive foods. Meat, veggies and fruits are all gluten free. It's the processed items that have gluten in them.

Now how many of your kids might need to be gluten free? You might see improvement in their health and behaviors if they were gluten-free.

I am so proud of you.

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

Some multivitamins can be broken in half if you find them too large to swallow. Remember those huge vitamin pills are still smaller than a piece of meat that you swallow. Unless you have trouble swallowing food and water you can swallow them.

I teach kids to swallow pills by using M and Ms. They swallow a few candies with water they get to eat 10 of them. Then I give them a pill. Swallow the pill and they can have the rest of the M and Ms in the bag (suggest a small bag). Surprising how fast kids can swallow a pill. Plain M and Ms are gluten free. This method works only on adults who like M and Ms (suggest using a large bag of M and Ms for adults).

I used this method with both my kids. They can take anything. My dd can take 12 pills at once without any problem.

ktnhsv Newbie
ktnhsv
Posted
  • Author
It's called withdrawal. You can do this! You have improved so much just keep going. You already have your answer you were looking for in your first post.

Remember going gluten free does not mean you have to buy expensive foods. Meat, veggies and fruits are all gluten free. It's the processed items that have gluten in them.

Now how many of your kids might need to be gluten free? You might see improvement in their health and behaviors if they were gluten-free.

I am so proud of you.

Thank you so much for encouragement, I needed it! I am sitting here crying like a baby or a drug addict because the cravings are so severe. Did I mention I cut my sugar down 75% too? And I switched to frangrance free toiletries. I'm trying to keep focused on the positive.......trying.

ktnhsv Newbie
ktnhsv
Posted
  • Author
Some multivitamins can be broken in half if you find them too large to swallow. Remember those huge vitamin pills are still smaller than a piece of meat that you swallow. Unless you have trouble swallowing food and water you can swallow them.

I teach kids to swallow pills by using M and Ms. They swallow a few candies with water they get to eat 10 of them. Then I give them a pill. Swallow the pill and they can have the rest of the M and Ms in the bag (suggest a small bag). Surprising how fast kids can swallow a pill. Plain M and Ms are gluten free. This method works only on adults who like M and Ms (suggest using a large bag of M and Ms for adults).

I used this method with both my kids. They can take anything. My dd can take 12 pills at once without any problem.

I can swallow Tylenol and Advil. Any suggestion on a brand of vitamin?

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I take Centrum. Sometimes I can find coupons for it in the newspaper.

I remember having a nightmare when I first went gluten-free. I was crawling down a hallway with my hand raised up into the air begging for a cracker.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you so much for encouragement, I needed it! I am sitting here crying like a baby or a drug addict because the cravings are so severe. Did I mention I cut my sugar down 75% too? And I switched to frangrance free toiletries. I'm trying to keep focused on the positive.......trying.

Hang in there. The withdrawl will end and you will feel so much better. Is there something gluten free that is a treat for you that might help? I used chocolate to help me feel less restricted. I like dark chocolate and just bought a baking bar. If you can try to take some time for you, take a long shower or bath, read a book, watch a funny TV show, shop, anything to help you feel a bit pampered. You will get through this.

Jean'sBrainonGluten Newbie
Jean'sBrainonGluten
Posted

I know you're in withdrawal and that's a tough time - hang in there!

Even after a long time gluten free I sometimes get cravings because my family eats gluten stuff. It helps me to keep their stuff out of sight and to be meticulous about cleaning up (crumbs or whatever) and using ventilation so I don't have to smell their stuff.

Also, if you're concerned about the cost of gluten free eating with a large family there's a nice article about shopping gluten and casein free on food stamps at

Open Original Shared Link

Good luck!

Jean'sBrainonGluten Newbie
Jean'sBrainonGluten
Posted

Oh just found another article on keeping down costs on the diet.

Open Original Shared Link

ktnhsv Newbie
ktnhsv
Posted
  • Author
Hang in there. The withdrawl will end and you will feel so much better. Is there something gluten free that is a treat for you that might help? I used chocolate to help me feel less restricted. I like dark chocolate and just bought a baking bar. If you can try to take some time for you, take a long shower or bath, read a book, watch a funny TV show, shop, anything to help you feel a bit pampered. You will get through this.

Thank you, I had a reece's cup, which just hurt my teeth. I started feeling better after taking my vitamin. Mornings are the hardest. I noticed you had anxiety and depression, was it severe? Is it better now? Thanks for the support!

ktnhsv Newbie
ktnhsv
Posted
  • Author
Oh just found another article on keeping down costs on the diet.

Open Original Shared Link

Thank you for the links! Doing this has made realize how bad we eat as a family. I won't expect them to go gluten free, but I am making changes for them! Like organic and staying away from processed junk! Our diet used to be wheat, dairy, sugar, processed foods, and fast foods. Big changes have happened! :)

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you, I had a reece's cup, which just hurt my teeth. I started feeling better after taking my vitamin. Mornings are the hardest. I noticed you had anxiety and depression, was it severe? Is it better now? Thanks for the support!

The depression preceliac diagnosis for me was severe but came and went several times a month and doctors thought it was PMDD for most of my life. If your female it seems doctors like to blame depression on menses even when we know that isn't what it is linked to.

The depression lifted when the withdrawl did, which for me was about a week to 2 weeks into the diet. It was like one day I woke up and it was gone. The only time I have had issues with clinical depression since is when glutened then it hits hard and short. When glutened it comes back strong but only lasts a day. My anxiety was different but it was not caused by celiac but by PTSD from childhood and spousal abuse and other severe traumas. For that I finally gave in and started to fight it with therapy and an antianxiety med. With that it is finally getting a bit better but I still have a way to go.

ktnhsv Newbie
ktnhsv
Posted
  • Author
The depression preceliac diagnosis for me was severe but came and went several times a month and doctors thought it was PMDD for most of my life. If your female it seems doctors like to blame depression on menses even when we know that isn't what it is linked to.

The depression lifted when the withdrawl did, which for me was about a week to 2 weeks into the diet. It was like one day I woke up and it was gone. The only time I have had issues with clinical depression since is when glutened then it hits hard and short. When glutened it comes back strong but only lasts a day. My anxiety was different but it was not caused by celiac but by PTSD from childhood and spousal abuse and other severe traumas. For that I finally gave in and started to fight it with therapy and an antianxiety med. With that it is finally getting a bit better but I still have a way to go.

I have terrible, terrible anxiety. And have for 11 years. I don't leave home much, and when I do it's only to my comfortable places. I had wondered if Celiac can really be the cause of that severe of anxiety. I've also wondered if vitamin deficiency can cause that severe of anxiety. Have you ever had your B's and D levels checked? I haven't.

My depression isn't as severe, it's mainly due to having such debilitating anxiety, I think.

I've cut out SO much sugar these past few days, hoping that would help the eczema, depression, and anxiety as well.

Day 5! :)

GottaSki Mentor
GottaSki
Posted

Good Morning All-

Wow, could not have had better news - Ktnhsv, so glad that you are giving living gluten-free a try to improve your health!

These first days and sometimes first months are the hardest, but you can do it. As you have seen, it is better to ask questions here and get support rather than suffer alone.

I do have wonderful news--I am improving daily. My digestive symptoms are entirely gone at 9 months gluten-free -- living gluten free is the key -- hang in there.

My fibromyalgia symptoms are improving since diagnosis by taking a couple specific amino acid supplements along with the vitamin and mineral supplements I'd been taking since March. I haven't had "fog" for three weeks and have increased my day from 4-6 hours without pain/stiffness to 14 hours! The key to my improvement was my theory that if I hadn't been absorbing vitamins and minerals, what else hadn't I been absorbing for years. Fibromyalgia is tied to lack of essential aminos (which we get when we digest protein).

I feel like I have my life back - You can do it too!

-Lisa

ktnhsv Newbie
ktnhsv
Posted
  • Author
Good Morning All-

Wow, could not have had better news - Ktnhsv, so glad that you are giving living gluten-free a try to improve your health!

These first days and sometimes first months are the hardest, but you can do it. As you have seen, it is better to ask questions here and get support rather than suffer alone.

I do have wonderful news--I am improving daily. My digestive symptoms are entirely gone at 9 months gluten-free -- living gluten free is the key -- hang in there.

My fibromyalgia symptoms are improving since diagnosis by taking a couple specific amino acid supplements along with the vitamin and mineral supplements I'd been taking since March. I haven't had "fog" for three weeks and have increased my day from 4-6 hours without pain/stiffness to 14 hours! The key to my improvement was my theory that if I hadn't been absorbing vitamins and minerals, what else hadn't I been absorbing for years. Fibromyalgia is tied to lack of essential aminos (which we get when we digest protein).

I am glad you have had great improvements! Gives me hope and a dose of "I've got to be patient". :) Please, please feel free to share your vitamin regiman, as I've yet to figure what and how much to take of anything! I'm still having bad muscle pains and aches, and dizziness, and I feel like I could help it all with adding vitamin supplements.

I feel like I have my life back - You can do it too!

-Lisa

ktnhsv Newbie
ktnhsv
Posted
  • Author

Ok-how did that happen? My reply is mixed in with Lisa's reply! Ooooops!

ravenwoodglass Mentor
ravenwoodglass
Posted
I have terrible, terrible anxiety. And have for 11 years. I don't leave home much, and when I do it's only to my comfortable places. I had wondered if Celiac can really be the cause of that severe of anxiety. I've also wondered if vitamin deficiency can cause that severe of anxiety. Have you ever had your B's and D levels checked? I haven't.

My depression isn't as severe, it's mainly due to having such debilitating anxiety, I think.

I've cut out SO much sugar these past few days, hoping that would help the eczema, depression, and anxiety as well.

Day 5! :)

There are folks who do suffer celiac related anxiety and have had it ease up on the diet. Hopefully it will help for you also. I know what you mean about not leaving home much, I got to the point where I was basically agoraphobic. I am slowly getting my life back though. If the diet doesn't help with the anxiety issues do try working with a therapist. Many areas have places to access on sliding fee or even free.

I actually take sublingual B12, a high potency D3 and a Stress Vitamin formula. My B12 at last check was good and high but I was supplementing. It was tested before diagnosis and was low so I have been supplementing since a year or so before I went gluten-free. It made a big difference.

GottaSki Mentor
GottaSki
Posted

I have taken the following for nine months:

Multi, Calcium with Mag and D, B-6/B-12 combo, fish oil - morning

Added the following when diagnosed with Fibro:

Malic Acid - 800mg morning and afternoon

Added about 6 weeks ago:

L-Tryptophan at bedtime and N-Acetyl-L-Tyrosine in the morning.

Added 3 weeks ago:

Tyrosine with afternoon Malic Acid

Am holding here for a least a few months as I had such major improvement this month, don't want to mess with anything.

CAUTION: Tryptophan and Tyrosine should not be mixed with many medications -- always consult your doctor before taking anything -- prescription or over the counter.

Also note: I had improvement with digestive issues at about 6weeks - present, but aches/joint stiffness/fog/major fatigue all worsened until I started supplementing amino acids.

ktnhsv Newbie
ktnhsv
Posted
  • Author

Update!

Day 7......no changes. Except I have more energy, but I think it's because I haven't had carbs and barely any sugar. I am eating way more healthier now than I ever have.

Is there any point on me continuing to do this? (not eat gluten or wheat) (I'm still going to continue to eat healthy)

ravenwoodglass Mentor
ravenwoodglass
Posted
Update!

Day 7......no changes. Except I have more energy, but I think it's because I haven't had carbs and barely any sugar. I am eating way more healthier now than I ever have.

Is there any point on me continuing to do this? (not eat gluten or wheat) (I'm still going to continue to eat healthy)

I would stay on the diet for at least a month and eat only whole unprocessed foods during this time. Make sure you are also staying away from dairy during this time.

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