New to Celiac and Feeling Overwhelmed

[Llana]

Hi everyone! I'm Lana and new here. I've been reading up on Celiac basics and have been on these forums for several hours now. I'm looking to get some guidance, tips, suggestions, and overall emotional support. It seems the more I read, the less I know. 

My Story: (not necessary to read)

I have been dairy-sensitive most of my life. In 2020 I went mostly vegan (where you can, sometimes you don't know what is in stuff.) This drastically improved my quality of life, my mental wellness, and my physical health. It was a rocky start, opting for the "fake meats" and overly processed foods in the beginning. In the last two years I have been eating a more whole, nutritious diet.

I live in Western Canada. In the summer I traveled across Europe and I started having minor reactions to (what I know now) was the bread. Oh how the Europeans love their bread. It started with bloating, then constipation, then depression. All symptoms I regularly got when I consumed any kind of dairy. (So I assumed that is what it was.) It wasn't until I was in Germany and got what I thought was food poisoning three times in one month, that I really started circling back on everything I was eating. I ended up getting quite violently ill - diarrhea, vomiting, chills, fever, the works. I started thinking - it must be gluten.

So, three weeks ago, after getting back, I visited my doctor and was confirmed Celiac + Iron Deficient Anemic + Vitamin D Deficient. After getting sick, I stopped intaking gluten in noticeable sources, and after my diagnosis I've been as strict as possible. There have been slip ups, but that's a part of the learning curve with checking every little ingredient when cooking. 

This is where my posting comes in. I've absorbed a lot of information regarding the disease, the precautions, and the lifestyle. However there are some things I have been reading on these forums specifically that I get lost in and would like suggestions from all of you very knowledgeable, and more experienced people.

My Questions (save time, start here)

1. I started taking Polyride Iron Complex. My doctor prescribed 2x daily but the pharmacists suggest 1 every 2 days. I find myself getting a crash and feeling tired and joint pain about 2+ hours after taking it. I do take it at lunch with vitamin c. And my metabolism slows down with them. Being a vegetarian currently, meats are off the table. I do typically eat heavy on the green vegetables. Any suggestions on how to increase my iron without adding additional processing to my tummy? Or a schedule to make the iron supplements easier?

2. I've been reading a lot on here saying food allergies or sensitivities to things like corn are common. Do these feel like gluten reactions? Is it a good idea to get a food allergy test done?

3. Does Celiac make other "sensitivities" turn into full blown allergic reactions? I read the article about latex vegetables, and regarding my previous dairy sensitivity. Also something about random herbs and foods people suddenly react to. What are the most common celiac related allergies you all have experienced post diagnosis? At this point I'm wondering what can I eat, versus what to avoid.

4. I'm taking a Vitamin B complex and D regularly, as well herbal teas to help with the absorption. C with the iron, etc. From several articles and responses, it looks like Celiacs pretty much need all vitamins to support the healing and recovery process... Should I be taking a multivitamin? Or vitamins to focus on in my diet and through supplements?

5. There aren't many threads on tips for pregnancy and celiac. (Most just pertaining to risks and scary stats.) Any suggestions to encourage a healthy pregnancy when newly navigating celiac disease?

6. Overall, does anyone have tips or words of encouragement for lifestyle? From products to avoid, to natural methods to incorporate, and other reading sources? Also things, symptoms, side effects, and adverse reactions or complications regarding Celiac to keep an eye on.

7. I've also been reading a lot on here of people talking specifically about levels of things in their bloodwork. I don't really know what those are and don't get my results unless expressly asked for them. My doctor and I, however, have a great relationship and she will help me with any tests or referrals should I need and within reason. If anyone has anything to add regarding things to ask my medical team, types of people to visit, tests to request, etc.

8. If I do get gluttoned, have any of you had luck with home remedies that help with the yucky feelings? I'm currently hurting from what must have been corn yesterday and SALAD DRESSING (of all things) that had wheat flour in it. 

I know this is a very long post of information, me, and questions. I so appreciate the feedback and help anyone can provide for any of these, and hopefully another new person can find this thread useful too. 

I'm the type of person who's mental health is significantly and directly impacted by my digestive health. I usually love cooking and trying new recipes. I typically eat an Eastern Asian diet, lots of rice, veggies, stir fries, etc. But my biggest struggle right now is losing interest in eating. The iron pills diminish my appetite, and when I'm worried about getting sick from things, even if they don't have wheat in them, I'd rather not eat at all. That's the mindset I have right now anyway. Mentally and emotionally (as many of you know), it's hard to feel myself when I'm not feeling myself. Or when I have to bubble myself from any number of things! I'm feeling a little bit overwhelmed with the number of things I should and shouldn't do, and how any day it could be up in the air and switch up again. I have enjoyed reading your stories of your journies navigating your relationships with your diagnoses, and the routines you've settled in that keep you feeling really good. So please share as well!

Thanks again. Chat soon. x Lana.

[Scott Adams]

Here are some general answers to some of your questions, as I don't have all the answers. Be sure your diet, meds, and supplements are gluten-free.  You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Wheatwacked]

Hi Lana,

  On 11/19/2023 at 6:27 AM, Llana said:

I went mostly vegan (where you can, sometimes you don't know what is in stuff.)

Expand Quote  

     That is a pretty good description of life with Celiac Disease; but the result of failure is more discomforting.

     Your vitamin and mineral needs in recovery to good health from Celiac are similar.  Celiac Disease is a disease of malapsorbtion.  Here are links to two papers regarding vitamins in pregnancy.  Neither is the ultimate answer, there isn't one.  Your needs will change as you recover.  Vitamin D is the administrator of the immune system. It also has great effect on mental health.  (Seasonal Affective Disorder is the most obvious.)  Because our primary source is from the UV sunlight.  We store it up in summer, and can survive low levels in the winter.  If we start winter at a low level, not enough sun or supplements, by summer we are in deficit.  Normal blood level of a liveguard at the end of the summer is around 200 nmol/L.

• Evidence based recommendations for an optimal prenatal supplement for women in the US: vitamins and related nutrients
• Periconceptional intake of vitamins and fetal death: a cohort study on multivitamins and folate

Also attached is chart of the vitamins and minerals with RDA's and UL limit.  Maybe it will help to be less overwhelming.

To reduce inflammation choose foods low in omega 6.  Wheat flour has an omega 6 to 3 ration of 22:1. Sweet potato 18:1.  Russet potato 3:1.  Try to get a balance of 3:1 or less overall.  As gut inflammation goes down you'll be able to tolerate some of your old foods again.  With  salt fermented pickles Bubsies is a Canandian brand sold here (vinegar based pickles won't do it) to repopulate lactobacillus which will add lactose in your gut for digesting milk sugar, and reduces inflammation without gluten, maybe you'll tolerate milk again.  An excellant source of nutrients, including potassium.  In the fifies lactose intolerance was rare and commercial milk fat less inflammatory.

My supplements

 

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder).

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism.

500 mg Nicotinic Acid - increase capillary blood flow

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenouslybut not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).

840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine).

Iodine – Slow healing, muscle tone, testosterone, hyper and hypo thyroid, I eat Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. Just started using Stong Iodine. 6 drops a day is double the RDA of iodine, yet only one third the Safe Tolerable Upper Limit in the US. On sixth the UL in Japan.

[knitty kitty]

Welcome to the forum, @Llana!

Question 1: Iron supplementation...

Iron is better absorbed if taken separately, away from food and other supplements and medications that can interfere with iron absorption.  

I take my iron before bedtime, at least couple of hours after any food.  Vitamin C does help with iron absorption.  Vitamin C can make the digestive tract more acidic, which is great for iron absorption, but tough on my tummy, so I don't take a big dose of Vitamin C with the iron.  

You can take iron every day or every other day.  Sometimes my tummy gets touchy if I take iron every day, so I switch to the every other day dosing, taking two doses at night.  

You have to find what works best for you and your body, so experiment with the different dosing schedules.  

 

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9892593/

https://ods.od.nih.gov/factsheets/Iron-HealthProfessional/