Frustrated.

[Fbmb]

I'm frustrated and worried. For the past week I have felt like I did when I was first diagnosed. I feel fine all day and then first thing in the morning I start getting intestinal cramping and gas, and then I go to the bathroom and it's loose. I just go once and then I'm fine the rest of the day. If I go mid-day it's formed. I don't know what it going on.

last week I had a huge setback with my anxiety. I had loose stools intermittently all week and into this week. I haven't eaten out. I never do. I haven't eaten anything different. Everything I've eaten this week I've been eating all along and have felt fine. 

My anxiety has impacted my life so negatively. I am constantly afraid (I have health anxiety.). I am depressed. My marriage is suffering. And it seems like when you have two kids under 4 there is always something to deal with. Last night my son had a wicked rash on his back that I worried about, and then I spent the evening after he went to bed reading all kinds of terrible things on the internet. My husband had a fever last night and that made me anxious. Not to mention I run a nonprofit and I'm busy and stressed a lot. I like my job but it's a really busy job. I feel like I'm always running on fumes, so a little added stress derails me. I've been this stressed since I was diagnosed but its subsided and then come back with a vengeance in the last week. Oh, and then I learned about refractory celiac and I've been stewing over that.

I wake up in the morning and immediately start stressing about going to the bathroom. I did this for weeks after I was diagnosed and it slowly subsided. It seems like that stress causes intestinal cramping and then D. 

Part of me wants to go to my GI and get a colonoscopy but I also wonder if this is stress related. It's definitely stressing me out. I get stressed about the stress. It's a vicious cycle. 

I've been gluten free for 7 months. After about 4 months I was consistently better. But this has been a setback and I don't know why. I just want to cry. Any thoughts? 

[Ennis-TX]

OK get the colonoscopy for the peace of mind, it is probably nothing but at least you will not be worried over it. Try to relax try some yoga, and talking you problems out with someone works wonders with the stress, writhing them out helps also....I know the stress of running a program/business with hardly any income on it and always stressing on it.

PS few supplements that work great for this kind of stuff. Stress & Energy by liquid Health and Magnesium.....2-3 times a day try spacing it out so you do not get crashing/wane effects. If your having stool issues use Doctors Best Magnesium it is much easier on the stomach and will not cause a laxative effect. Also check your potassium intake, I found mine a bit lacking and zinc and starting consuming more spinach, pumpkin seeds, hemp seeds, coconut, and nutritional yeast and my health/stress issues seems to have relaxed further. Now my issues are there but I can think them through and come to a conclusion instead of looping like a mad man on how to fix them over and over and the worry driving me mad.  I use a CBD Gold Oil in a Vape Pen for emergency issues, not as good as edibles but at least it is legal and seems to work.

If you have iron absorption issues try taking a liquid vitamin C supplement, I take 1000mg twice a day. It works with your body to absorb iron.

[flowerqueen]

It sounds like anxiety to me.  I know exactly what you mean, and I've had issues like it in the past.  Also, if you have been gluten free for a while now, it could be that your diet is different or you maybe eating more of certain foods and you may have an intolerance to them.  I found  more food intolerances took hold after I've been gluten free for a while.   Try keeping a food diary and write down everything you eat and drink. My latest intolerances include, xanthan gum, E464, mustard, onions, fructose and soy. I already had a dairy intolerance, so it's been quite difficult finding foods that don't include one or more of the above. (Especially gluten free bread).  

When you are anxious it definitely can have an effect on your gut/bowels, so anything that can help you relax (which I know is easier said than done when you have such a busy lifestyle),  but making some time for yourself is important. 

Regarding the above post 'Doctors Best Magnesium' I live in the UK and have not heard of this, but, I would strongly advise not taking magnesium if you already have lose stools as it can make them worse.

[Ennis-TX]

2 hours ago, flowerqueen said:

It sounds like anxiety to me.  I know exactly what you mean, and I've had issues like it in the past.  Also, if you have been gluten free for a while now, it could be that your diet is different or you maybe eating more of certain foods and you may have an intolerance to them.  I found  more food intolerances took hold after I've been gluten free for a while.   Try keeping a food diary and write down everything you eat and drink. My latest intolerances include, xanthan gum, E464, mustard, onions, fructose and soy. I already had a dairy intolerance, so it's been quite difficult finding foods that don't include one or more of the above. (Especially gluten free bread).  

When you are anxious it definitely can have an effect on your gut/bowels, so anything that can help you relax (which I know is easier said than done when you have such a busy lifestyle),  but making some time for yourself is important. 

Regarding the above post 'Doctors Best Magnesium' I live in the UK and have not heard of this, but, I would strongly advise not taking magnesium if you already have lose stools as it can make them worse.

As for a bread free of those There is a company here in the US that makes a Almond/Coconut bread and ships it called Julians Bakery free of those also grain free, very low/no carb. They make a mix you can order online on amazon if outside the US along with many other mixes, Simple mills has some other stuff but most of theirs have sugars. But these are mostly free of xantham gum, soy, dairy, etc.

As to the magnesium the Doctors Best is a chelated version that does not create the laxative effect common with Magnesium Citrate. I mentioned that brand as it does not cause stomach irritation or gut issues. Otherwise I would have suggested Natures Vitality Calm which does have a laxative effect on some people and will do so in large doses.

[flowerqueen]

Hi, that is very interesting, I wish we had that sort of thing in the UK, I wonder if it is available on the UK's Amazon as well as Amazon.com?  I will investigate this.  I think we have lagged behind in some areas of food substitute varieties over the pond.   Thank you for the information about Doctors Best.

[knitty kitty]

Hello, 

I think the problem might be dairy consumption. Celiac Disease results in damaged villi in the small intestine. The damaged villi can't absorb nutrients well, and they can't produce digestive enzymes that break down the sugars in milk. Taking lactose pills may help break down the milk sugars a little, but the protein in dairy products, casein, can elicit a reaction just as if you've eaten gluten.  You may want to consider going dairy free for several months in order to give your body time to heal.  You may be able to reintroduce dairy after you've healed more. 

Open Original Shared Link

 

Celiac Disease causes malabsorption which results in malnutrition.  Damaged intestines can't absorb nutrients.  One frequently deficient vitamin is Vitamin D.  There is a well studied connection between low vitamin D and anxiety.  

Low B 12 may also cause anxiety.  The B vitamins are often low because of malabsorption.  They all work together, so if you're low on one, supplementing them all would ensure proper functionality of each.

Open Original Shared Link

Hope this helps.

 

[Fbmb]

4 hours ago, knitty kitty said:

Hello, 

I think the problem might be dairy consumption. Celiac Disease results in damaged villi in the small intestine. The damaged villi can't absorb nutrients well, and they can't produce digestive enzymes that break down the sugars in milk. Taking lactose pills may help break down the milk sugars a little, but the protein in dairy products, casein, can elicit a reaction just as if you've eaten gluten.  You may want to consider going dairy free for several months in order to give your body time to heal.  You may be able to reintroduce dairy after you've healed more. 

Open Original Shared Link

 

Celiac Disease causes malabsorption which results in malnutrition.  Damaged intestines can't absorb nutrients.  One frequently deficient vitamin is Vitamin D.  There is a well studied connection between low vitamin D and anxiety.  

Low B 12 may also cause anxiety.  The B vitamins are often low because of malabsorption.  They all work together, so if you're low on one, supplementing them all would ensure proper functionality of each.

Open Original Shared Link

Hope this helps.

 

Sometimes it's hit or miss. I've wondered often if I have issues with dairy. But I'll eat yogurt for breakfast and feel fine the rest of the day. I haven't had milk in ages, unless it's in something else. But I've often wondered if dairy is a problem for me. Is casein in all things that contain milk or dairy? Even breads or crackers?

[Ennis-TX]

2 minutes ago, Fbmb said:

Sometimes it's hit or miss. I've wondered often if I have issues with dairy. But I'll eat yogurt for breakfast and feel fine the rest of the day. I haven't had milk in ages, unless it's in something else. But I've often wondered if dairy is a problem for me. Is casein in all things that contain milk or dairy? Even breads or crackers?

If it contains milk then it contains the proteins casein and whey, lactose is sometimes processed out, or removed/reduced with bacteria. Lactose is the sugar in milk if I am correct and is often the major culprit with people. Lactose is reduced in yogurt and cheeses by having bacteria eat the sugars chains that make up lactose hince why some people are not bothered by hard cheeses or find yogurt easier then milk to digest. (This is if I recall correctly, still morning only had 1 cup of coffee)  I might suggest removing all dairy for a bit and seeing how you feel. Change over to almond milk, or cashew milk if you can. PS get the the refrigerated ones, the shelf stable ones are normally thinner and seem more off although they are better for cooking with. I eat So Delicious coconut yogurt myself for the probiotics and cultures they put in them, also a good source of healthy fats. Bit hard to find the unsweetened ones but I buy them by the case.  If you need any other help trying to go dairy free I know all the brands and where to find everything lol. Been dairy free for 10+ years. Well I do have some cheese alternatives that use Casein protein but they do not bother me in the least.

[Fbmb]

13 minutes ago, Ennis_TX said:

If it contains milk then it contains the proteins casein and whey, lactose is sometimes processed out, or removed/reduced with bacteria. Lactose is the sugar in milk if I am correct and is often the major culprit with people. Lactose is reduced in yogurt and cheeses by having bacteria eat the sugars chains that make up lactose hince why some people are not bothered by hard cheeses or find yogurt easier then milk to digest. (This is if I recall correctly, still morning only had 1 cup of coffee)  I might suggest removing all dairy for a bit and seeing how you feel. Change over to almond milk, or cashew milk if you can. PS get the the refrigerated ones, the shelf stable ones are normally thinner and seem more off although they are better for cooking with. I eat So Delicious coconut yogurt myself for the probiotics and cultures they put in them, also a good source of healthy fats. Bit hard to find the unsweetened ones but I buy them by the case.  If you need any other help trying to go dairy free I know all the brands and where to find everything lol. Been dairy free for 10+ years. Well I do have some cheese alternatives that use Casein protein but they do not bother me in the least.

I think that when I have anxiety or IBS flare ups dairy is harder on me. But I don't think dont think I have issues with casein, as i can eat whole milk yogurt or cheese and feel fine. This issue I'm having seems to only hit in the morning upon waking when I start feeling really anxious about it. Today I tried some guided meditation and it didn't happen. But, that said, I'm still careful with milk and don't drink it straight. I don't want to restrict my diet too much, but I'll keep an eye on it. If anything I think I may have lactose sensitivities but I doubt it's casein. Maybe I'll go see an allergist.

[Ennis-TX]

7 minutes ago, Fbmb said:

I think that when I have anxiety or IBS flare ups dairy is harder on me. But I don't think dont think I have issues with casein, as i can eat whole milk yogurt or cheese and feel fine. This issue I'm having seems to only hit in the morning upon waking when I start feeling really anxious about it. Today I tried some guided meditation and it didn't happen. But, that said, I'm still careful with milk and don't drink it straight. I don't want to restrict my diet too much, but I'll keep an eye on it. If anything I think I may have lactose sensitivities but I doubt it's casein. Maybe I'll go see an allergist.

Random thought for self testing. Buy Pure casein protein, pure lactose free whey protein, and remove all other dairy from your diet for a week. After 7 days try either the whey or the casein and use it for 2 days then stop see how you feel free of any dairy another 2 days then try the other for 2 days. All the while not having anything with lactose or other milk products.....You can do a bit of self testing this way.

[cyclinglady]

You have received some good advice.  Make sure you are not deficient in anything.  Watch the amount of lactose you are ingesting in one sitting.  Flower Queen had a great suggestion.  Give up Xanthan Gum!  I thought I was getting glutened when I was a Newbie.  But how?  I was eating the same things my gluten-free hubby had been eating for 12 years and he was fine.  It was Xanthan Gum!  So, I do not eat anything with it.  No commercial breads, etc.  I bake without it and I am fine.  I buy commercial bread, but just feed it to hubby.  

Two small kids, a hubby and working?  It might be too much for now.  Can you stop working?  Take a medical leave of absence?  (You can not get rid of your kids and you should keep your hubby too!).  

You might need medication for the anxiety.  Consider taking it.  It is okay to need help!  

You could get a colonoscopy, but chances are it is okay, but you could check.  What you need help with is dealing with a life long autoimmune disease.  You need to get into a happier place that is best for you and your family.  Even if you develop something else along the way, or another family member gets sick, you need to learn to cope with it.  

Talk to your doctors.  They have the resources to help you. 

[Ennis-TX]

7 minutes ago, cyclinglady said:

You have received some good advice.  Make sure you are not deficient in anything.  Watch the amount of lactose you are ingesting in one sitting.  Flower Queen had a great suggestion.  Give up Xanthan Gum!  I thought I was getting glutened when I was a Newbie.  But how?  I was eating the same things my gluten-free hubby had been eating for 12 years and he was fine.  It was Xanthan Gum!  So, I do not eat anything with it.  No commercial breads, etc.  I bake without it and I am fine.  I buy commercial bread, but just feed it to hubby.  

Two small kids, a hubby and working?  It might be too much for now.  Can you stop working?  Take a medical leave of absence?  (You can not get rid of your kids and you should keep your hubby too!).  

You might need medication for the anxiety.  Consider taking it.  It is okay to need help!  

You could get a colonoscopy, but chances are it is okay, but you could check.  What you need help with is dealing with a life long autoimmune disease.  You need to get into a happier place that is best for you and your family.  Even if you develop something else along the way, or another family member gets sick, you need to learn to cope with it.  

Talk to your doctors.  They have the resources to help you. 

OH this reminds me this might be of interest to you and your husband and to Fbmb Open Original Shared Link

They make bread free of xantham gum, dairy, soy, etc. ONLY bread I can eat. You have to toast it and expect to make open sandwiches with it not closed top. PS the coconut is like white the almond is deeper nutty flavor like whole grain. I love making french toast with it.