Starting on our Celiac journey

[Bryan100]

Hello everyone!  First, I'd like to apologize in advance for the long post.  My name is Bryan and my girlfriend (Bridgette) was just been diagnosed with Celiac on 2/11/22, so as you can tell, we're at the beginning stages of this.  This has been a long journey for us.  Bridgette has been battling health issues for a while now with no diagnosis.  Over the past several months we thought it was Cushing's or Addison's as the symptoms matched well with what she was going through.  Well after all the testing, Celiac was the diagnosis.  Not only are we dealing with the Celiacs but she is also diabetic (Type 1.5) and Crohn's.  Bridgette has met with a dietician and right now the goal is to put some weight on her.  She is 5'4" and at her lowest weighed 96 lbs.  Since that time she has gained some weight but still running in the 110 lbs range. Bridgette has been battling all the symptoms, hair loss, anxiety, brain fog, gastro issues, headaches, weight loss, insomnia, dangerously low potassium (couple of hospital visits for that one), and so on.  I'm sure all here know what we're talking about.  We have both done a ton of research but still so much to learn.  It seems like every time we turn around we have another question so here we are...LOL!   

 

Bridgette has been gluten-free since her diagnosis but admittedly we don't have clue what we're doing.  One thing I have learned through this process, we better work on our cooking skills real fast!  Anyway, below are some questions we have at this time and would appreciate any advice as we move forward.

Vitamins? Right now she is taking a B complex with B12 + a shot of Miracle 2000 energy.  We just started on a 100mg B1 (Thiamine) 2 times a day to help with brain fog, anxiety and headaches.  Should this be increased or are is this sufficient?

What to eat?  We're struggling with how to eat gluten-free and control blood sugar.  Bridgette is currently on 15mg of insulin a day.

Hair loss?  This a biggie for her and especially me as I'm so tired of hearing about the hair... .  Of course I'm kidding.  Bridgette is currently taking Biosil and Primrose Oil with the B vitamins mentioned above.  Any suggestions of other supplements she should be taking?

Exercise?  Bridgette's dietician said to she didn't want her to exercise much right now and to focus more on food intake as that should help with the malnutrition.  Did others wait to become more healthy before exercising again?  This just doesn't seem right to me.

 

Thanks in advance for any suggestions/advice.  We have already learned so much from this forum and appreciate all those that are here to help us newbies!

 

[trents]

Welcome to the forum, Brian100! Some suggestions:

1. Avoid processed food as much as possible, even gluten-free ones. The alternative flours used in gluten-free food products are not fortified with vitamins as are their wheat counterparts. And hen you must eat processed gluten-free food, choose those that are "Certified Gluten Free" rather that just "Gluten Free." Certified gluten-free foods are manufactured according to stricter requirements and contain no more than 5-10 ppm of gluten rather than meeting the minimum standard of no more than 20ppm.

2. Make sure all your vitamins and supplements are gluten-free. Costco's Nature Made line is an excellent choice. Also, check meds and cosmetics that go near the mouth for gluten. And Brian, realize that if you eat something with gluten in it and then kiss your girl she will get some gluten.

3. Avoid eating out like the plague where you have no control over cross contamination.

4. Focus on eating fresh whole foods like fresh meat, veggies and fruit rather than processed foods.

5. As far as exercise, it is important for stimulating appetite and maintaining muscle mass. Just avoid too much of it and focus on things that build muscle mass rather than burn off a lot of calories. So moderate weight training would be a good choice, mixed with walking. I would avoid jogging as it tens to be an intense calorie burner but not contribute to muscle mass.

[trents]

Bridgette's hair loss is likely caused by vitamin/mineral deficiencies. Celiac disease damages the villi that line the small bowel. It's the area where nutrients are absorbed from the food we eat. It often takes up to two years for the villi to heal completely once a serious gluten free diet is begun. Also, it is common for celiacs to develop other autoimmune diseases over time and also to develop intolerance to other non gluten foods. Dairy, oats, eggs, and corn are common ones. So you might look at some other foods that could be causing her issues in addition to gluten.

Bridgette has only been diagnosed for a couple of weeks now so be patient. May we ask how old she is?

[Bryan100]

8 minutes ago, trents said:

Bridgette's hair loss is likely caused by vitamin/mineral deficiencies. Celiac disease damages the villi that line the small bowel. It's the area where nutrients are absorbed from the food we eat. It often takes up to two years for the villi to heal completely once a serious gluten free diet is begun. Also, it is common for celiacs to develop other autoimmune diseases over time and also to develop intolerance to other non gluten foods. Dairy, oats, eggs, and corn are common ones. So you might look at some other foods that could be causing her issues in addition to gluten.

Bridgette has only been diagnosed for a couple of weeks now so be patient. May we ask how old she is?

Thank you so much Trents for the reply!  We are both 52 years young.  

Yes, from our reading we are aware this could take some time so patience will be key.  Now if I can get Bridgette to realize that...LOL!  Thanks for the tip on weight training as that was something I was curious about.  Her arms and legs are very thin right now and I believe that is because of muscle loss.  Bridgette now has an account and will be posting here as well.  Thanks again for the help!

11 minutes ago, BridgetteK said:

 

Whatcha trying to say here Bridgette? Haha! You'll get the hang of it.  

As you can tell I try to keep the mood light so please don't kick us off...LOL!

[knitty kitty]

@Bryan100 and @BridgetteK,

Welcome to the forum!  Cheers to you, Bryan, for being so supportive and involved in Bridgette's recovery!  

A book I found most helpful is written by a medical doctor with Celiac and Celiac children (Dr. Sarah Ballantyne).  The AutoImmune Paleo Diet (AIP diet) she designed has been proven scientifically to help in healing not only Celiac, but also Crohn's and ulcerative colitis and IBS.  It's called "The Paleo Approach" and there are accompanying recipe books as well.  I follow the AutoImmune Protocol diet myself.

I have Type Two Diabetes.  All types of diabetics are notoriously low in Thiamine (Vitamin B1).  Seems diabetics lose more thiamine through excretion than nondiabetics.  I found taking thiamine (100 mg thiamine hydrocloride or Benfotiamine) with each meal and snack helps keep my blood sugar levels stabilized.  

I take a form of thiamine called Benfotiamine, a fat soluble form which enters cells easily, and which has been shown to promote healing in the GI tract and helps stabilize blood glucose levels in all types of Diabetes.  Thiamine is needed to make and secrete insulin.  Thiamine is safe in higher doses.   A minimum of 300 mg every day works best.  I have taken as much as 1000 mg of thiamine a day when I was first diagnosed.  I stick to about 500 mg a day now. 

Thiamine is also essential for hair growth.  Looks like other vitamins needed for hair health, like riboflavin and Vitamin A, are covered by the supplements Bridgette is already taking.

The one vitamin I suggest you increase is Vitamin D.  Vitamin D is essential to reducing inflammation.  Desired levels are above 78 nmols/l.  At that level and above, Vitamin D can work properly and acts as a hormone.

I agree with @trents about doing gentle muscle building exercises rather than aerobic (fat burning) exercises like running.  We don't want all those vitamins and nutrients going into building new muscles, we want those vitamins and nutrients going into healing the gastrointestinal tract and reducing inflammation right now.  

Thiamine is needed by every cell in the body including the brain.  The brain can use as much thiamine thinking as the body uses during physical activity.  Thiamine will help correct the brain fog.  Thiamine is needed for those muscles to work, so do go gently on the exercise until Bridgette's thiamine goes up a bit more.  She's got to replenish those thiamine bstores in all the cells in her body and brain.  Several weeks of supplementing (500 mg a day or more) may be necessary.  She'll be able to tell when she's ready for exercise.  

Hope this helps! 

 

[Bryan100]

6 minutes ago, knitty kitty said:

@Bryan100 and @BridgetteK,

Welcome to the forum!  Cheers to you, Bryan, for being so supportive and involved in Bridgette's recovery!  

A book I found most helpful is written by a medical doctor with Celiac and Celiac children (Dr. Sarah Ballantyne).  The AutoImmune Paleo Diet (AIP diet) she designed has been proven scientifically to help in healing not only Celiac, but also Crohn's and ulcerative colitis and IBS.  It's called "The Paleo Approach" and there are accompanying recipe books as well.  I follow the AutoImmune Protocol diet myself.

I have Type Two Diabetes.  All types of diabetics are notoriously low in Thiamine (Vitamin B1).  Seems diabetics lose more thiamine through excretion than nondiabetics.  I found taking thiamine (100 mg thiamine hydrocloride or Benfotiamine) with each meal and snack helps keep my blood sugar levels stabilized.  

I take a form of thiamine called Benfotiamine, a fat soluble form which enters cells easily, and which has been shown to promote healing in the GI tract and helps stabilize blood glucose levels in all types of Diabetes.  Thiamine is needed to make and secrete insulin.  Thiamine is safe in higher doses.   A minimum of 300 mg every day works best.  I have taken as much as 1000 mg of thiamine a day when I was first diagnosed.  I stick to about 500 mg a day now. 

Thiamine is also essential for hair growth.  Looks like other vitamins needed for hair health, like riboflavin and Vitamin A, are covered by the supplements Bridgette is already taking.

The one vitamin I suggest you increase is Vitamin D.  Vitamin D is essential to reducing inflammation.  Desired levels are above 78 nmols/l.  At that level and above, Vitamin D can work properly and acts as a hormone.

I agree with @trents about doing gentle muscle building exercises rather than aerobic (fat burning) exercises like running.  We don't want all those vitamins and nutrients going into building new muscles, we want those vitamins and nutrients going into healing the gastrointestinal tract and reducing inflammation right now.  

Thiamine is needed by every cell in the body including the brain.  The brain can use as much thiamine thinking as the body uses during physical activity.  Thiamine will help correct the brain fog.  Thiamine is needed for those muscles to work, so do go gently on the exercise until Bridgette's thiamine goes up a bit more.  She's got to replenish those thiamine bstores in all the cells in her body and brain.  Several weeks of supplementing (500 mg a day or more) may be necessary.  She'll be able to tell when she's ready for exercise.  

Hope this helps! 

 

Thank you so much knitty kitty for all the great information and advice!  The thiamine supplement she is currently taking is a Nature Made vitamin in pill form.  We've wrote down the Benfotiamine and checking where to get it now. We will also be upping her dosage as of right now she's only getting 230mg a day. Thanks again to you and @trents for all the great advice.  Bridgette and I have been reading several of your posts in our research and the knowledge here has helped us out so much. 

[Bryan100]

@knitty kittyI also wanted to mention that we had a friend mention the paleo (caveman) diet to us previously.  We will be checking into that as well.  Neither of us are chefs but we're realizing real quick that cooking our own meals is what we're going to need to do. I've done a lot of reading about setting up the kitchen to avoid cross contamination.

[Scott Adams]

For the hair loss issue, you may also want to read up on the DHEA supplement, as it is often recommended for women with hair loss issues.

[Bryan100]

25 minutes ago, Scott Adams said:

For the hair loss issue, you may also want to read up on the DHEA supplement, as it is often recommended for women with hair loss issues.

Thanks Scott for the information!  I've not heard of the DHEA supplement so will start researching.  Thanks again!

[Rogol72]

@Bryan100,

I don’t have much else to offer beyond the advice of Trents, Knitty Kitty and Scott Adams, other than some supportive comments.

I’ve had Ulcerative Colitis ... the little brother of Crohn’s for 20 years, dropped from 155lbs to 135lbs in the space of a few weeks. I was skin and bone and I recovered. I’ve had Celiac Disease and DH for 12 years. I’m back to my normal weight of 160 lbs.

For me, switching to the AIP diet was the turning point. It can be a challenge but it’s worth it. Today, I feel great ... bar the odd hiccup here and there. No more anxiety, no more brain fog, no more joint pain etc.

If you don’t know where to start on AIP and feel overwhelmed, check out http://thrivingonpaleo.com/ and associated youtube channel. She’s got loads of AIP recipes and lots of practical advice.

Regarding the anxiety and brain fog, I educated myself on all things nutrition. Getting my vitamin and mineral stores back to optimal levels, and most importantly getting neurotransmitter production back to optimal levels. Dr. Robert Pastore’s podcast on brain health and Coeliac Disease was an eye opener. He covers many other subjects relating to Coeliac Disease including Diabetes and IBD. I listened to his podcasts several times and took notes. He’s got Coeliac Disease and is a PhD in Clinical Nutrition.

One other thing, Coeliacs and those with Inflammatory Bowel Disease are prone to getting SIBO and Yeast/Candida in the gut. This may be a factor in causing brain fog.

Hope Bridgette gets back on the road to health soon.

[BridgetteK]

Thanks for all the great advice! I have a question and thought I'd piggy back off Bryan's thread. Is gluten withdrawal a real thing? What are the symptoms? I was feeling pretty good at first but now I feel exhausted and nauseous. Is this normal? 

[trents]

18 minutes ago, BridgetteK said:

Thanks for all the great advice! I have a question and thought I'd piggy back off Bryan's thread. Is gluten withdrawal a real thing? What are the symptoms? I was feeling pretty good at first but now I feel exhausted and nauseous. Is this normal? 

Yes, it is a real thing for some people and I think the symptoms you describe are normal. Gluten has an addicting effect. Also, part of what you are experiencing could be due to the nutrient fortifications that go into wheat flour by law but are not found or mandated for the alternative flours used in gluten-free baking. So, it's really important to be supplementing with B-complex, about 5000mcg of D3 and magnesium. Make sure all vitamins and supplements you are using are gluten-free.

[BridgetteK]

On 2/24/2022 at 1:50 PM, trents said:

Yes, it is a real thing for some people and I think the symptoms you describe are normal. Gluten has an addicting effect. Also, part of what you are experiencing could be due to the nutrient fortifications that go into wheat flour by law but are not found or mandated for the alternative flours used in gluten-free baking. So, it's really important to be supplementing with B-complex, about 5000mcg of D3 and magnesium. Make sure all vitamins and supplements you are using are gluten-free.

Thanks @trents  Very helpful!