Celiac disease is draining

[ghostie]

I found this forum just tonight when I was looking for gluten free shampoos and conditioners. I decided to sign up and make a post simply because I have been at a very low point with my mental health as of recently due to it, which is further exacerbating my other issues.

I struggle with complex mental illness (think BPD, C-PTSD, and disorders of the like), and ever since April, when the diagnosis came about, I have felt extremely discouraged about myself and my relationship with food. I have been further prone to fatigue, demotivation, and weight loss as a result too. My relationship with food has never been too great due to my mental conditions, but I'm being brought to a point to where I want to give up. I feel so stressed eating anywhere outside of home, I feel stressed by the idea of even eating due to the anxiety of being cross contaminated. I was sick for two years straight and hospitalized during the end of my high school years due to how badly glutened I was getting on a day to day basis. I had an endometriosis removal surgery that came back with nothing despite it showing up on MRI's (turned out to be ovarian cysts that were likely being exacerbated by celiac). Even now where I follow a strict gluten free diet and should in theory have an easier time with food, it's only gotten harder. I rarely eat these days and I'm only about 88 pounds as of checking last night. Eating isn't fun anymore and I always find myself with an impending sense of dread every time I have to eat. The only solutions I can seem to get from most people is to eat more, or to take weight gain supplements. I'm afraid of the weight supplements due to the pill or powder forms containing gluten. It feels like I can't ever win, and watching everyone around me enjoying the things I can't only serves to drive my mental health further and further into this hole. I don't know what I should do. I spoke with my father recently and he brought up counseling in passing, and it's something I should probably look into, but I need help. I need anything to make this easier while I try to search for a more solid solution. Any advice helps. Thank you. 

[trents]

Welcome to the forum, @ghostie!

Are you on psych meds for your mental health issues?

I heartily agree with your dad's suggestion to seek out counseling. You have a lot of issues going on that I doubt anyone would be able to successfully cope with apart from professional help. I would also suggest you connect with a dietician to help you address your nutritional needs. By the time most people finally get a correct dx of celiac disease they have suffered with it for years and it has trashed the lining of their small bowel, the section of the intestines where all of our nutrition is absorbed. By the time of diagnosis, therefore, most people are experiencing vitamin and mineral deficiencies which, by the way, can have a significant negative impact on mental health. Thiamine deficiency, for instance, can result in loss of appetite. 

On this forum we routinely recommend to newly diagnosed celiacs that they begin a taking high potency vitamin and mineral supplements including: B-complex, D3 (5000-10,000IU daily), magnesium glycinate or magnesium citrate (not magnesium oxide), and zinc. Make sure all are gluten free. Costco's Kirkland Signature and Nature Made lines are a good choice and reasonably priced.

[ghostie]

I am not currently on meds for my mental health issues due to a lack of professional support. Generalized therapy has not worked for my needs and so I have spent the past couple of years looking for more intense treatment. I was recently ghosted by a therapist and now I am looking for another who works in a similar realm that she does. 

Your suggestions make a lot of sense and are very helpful, so thank you. I never considered the amount of vitamin deficiencies that come with an autoimmune disorder like this despite struggling with several vitamin deficiencies the majority of my life (that I now know is a celiac related issue). Hopefully when I go out to grab some gluten free hygiene stuff I can grab some of those vitamins too. Do you have any diet related suggestions? I've had a hard time finding things to prepare and cook that don't contain gluten, or that I wouldn't have to go out of my way to find gluten free versions of. 

[trents]

When you say you were recently "ghosted" by a therapist, what does that mean? I'm not familiar with the term in that context.

My daughter has significant mental health issues. She has a psych professional (ANRP) for medication management but sees a counselor for talk therapy. My point being you can separate the medication prescriber from the therapist if that would be helpful in getting back on meds you may need. 

It's not that difficult to eat gluten free using mainline food products if you focus on things that are simple and fresh and are willing to cook for yourself instead of buying prepared gluten free meals. Fresh meat, fresh vegetables, fresh fruit, and eggs. Stay away from prepackaged things, things that are highly processed and things that have a long ingredient label. Limit seasoning to salt and pepper. One thing to realize is that gluten-free facsimile food products are not only way more expensive than mainline food products but they are generally less nutritious. Gluten free flours are not require to be fortified with vitamins and minerals as is wheat flour and products made from wheat flour. 

Eating out is the number one sabotaging activity of gluten free diets. There is just no good way to control what goes on back in the kitchen as far as cross contamination goes even when you order gluten free menu items. I have found two or three places I can eat out safely, or so it seems, as I am not a super sensitive celiac and probably can get away with a little CC without a noticeable reaction.

[Wheatwacked]

During the day I drink Red Bull for my energy carbs. 600+ calories a day. Red Bull because it has B3, B5, B6, B12 for transporting and converting the sugar and glucose to ATP.  It has Taurine, an essential amino acid antioxidant to neutralize the ROS oxidents created in the Krebbs Cycle.  Plus caffeine, magnesium, calcium.  It does not have any medicinal ingredients like other drinks.It shortcuts the carbs need to be processed by the liver.  Three or four glasses of milk with or without Nestle Quik Syrup.  I have a well established colony of lactobacillus from homemade dill pickles.

If I depend on eating and digesting other foods for energy I am always tired.  In me carbs go straight to belly fat or triglycerides.  

For dinner I usually have cooked ham and swiss, or roastbeef, on Canyon Bakehouse Heritage Style Whole Grain bread.  It has the best feel and taste for a sandwich.  A bunch of fermented olives, Flora. Potato chips.

Or Deep and Saffron Road have good gluten-free curries that I add 4 ounces of frozen shrimp and 4 ounces of frozen brocolli. Eqauls 18 ounces of food. 

For mental health: 10,000 IU vitamin D3 (since 2015) and 5 mg Lithium Orotate for anxiety.

I now take 1625 mcg of Liquid Iodine and 200 Selinium.  Everything is getting better.  I am getting unsick.  the Iodine is good for mental health also.

• Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

  10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

  500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

  Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

  Iodine – 1625 mcg of Liquid Iodine a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

  Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

  Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

  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 indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

  I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

  Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

  Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

 

  

[Wheatwacked]

3 minutes ago, Wheatwacked said:

Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

 

[Ida Hernandez]

Hello fellow Celiac friends

I was diagnosed with Celiac along with several other health issues all within the last 4 months. I am also one for depression, ptsd, bipolar, and mania due to trauma. Having Celiac has almost caused me more trauma to be honest. I have stood still dumb-founded as if I don't know how to eat even though I am so hungry and yet so afraid to eat. I concur with ghostie, eat or don't eat. I take several meds for mental health and Celiac. I finally afforded a dietitian and the first thing to correct were my meds...yes, several of the capsule meds contain gluten. With family I have learned to use back fridge and isolate my food just recently. I still get gluten and I am consistently fatigued even with vitamin supplements, vitamins also needs to be gluten free if possible.

Lots to write just to let off frustration, but it's not fair to you. I did though wanted to pass on about meds. Thanks. 

[Scott Adams]

When you are first diagnosed it is very normal to feel overwhelmed and depressed about the vast dietary changes that a 100% gluten-free diet entails.

There are a couple of things that can help you feel like you have "regained control," and the two that I recommend are learning to read ingredient labels so that you can shop with confidence, and the other is learning to become a good cook (if you aren't already). If you can master these two, then you have regained control of your diet, and can eat safely and recover.

To help this site has extensive recipes and cooking sections:

• https://www.celiac.com/celiac-disease/gluten-free-recipes/
• https://www.celiac.com/celiac-disease/gluten-free-cooking/

The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping.

It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.

 

 

 

[ghostie]

Thank you for this. I have been cooking the majority of my life and have had trouble finding gluten free recipes, and so this helps a lot. I live in the US and so figuring out labels hasn't been too difficult, and in some stores I go to there are gluten free sections at the end of most aisles. I'm hoping I can regain confidence in cooking and eating with the resources I have been provided with in the replies. 

[ghostie]

14 hours ago, trents said:

When you say you were recently "ghosted" by a therapist, what does that mean? I'm not familiar with the term in that context.

In this context I mean that my therapist stopped responding to my texts and calls when I tried to set up appointments; she stopped care without notifying me. For many years it has been hard to find long term therapists due to a good handful that I have had not being able to stomach some of my trauma related issues. I'm assuming the same with this therapist, but this is the first time I have been ditched without a word. Maybe it's the state I live in, but medical neglect in the mental health realm is all too common which is partially why it's been so difficult. 

I appreciate the suggestions. I've been rotating through the same few kinds of foods for a while now, and any time I eat out it's usually fast food places where I can see them preparing the food to ensure they're taking measures to prevent cross contamination. In a stroke of luck I have a few places that I can go to but I do miss cooking. I got some good suggestions and links in some other replies though, so hopefully I can create a good balance between the two. I'm extremely sensitive to cross contamination (had to replace all of my hygiene products, my makeup bag, and the majority of my belongings) so cooking at home is probably my best bet anyway. I feel relieved that there are options even if the strict diet stays the same. Would much rather be on my own two feet with the inconvenience of a gluten free diet than hospitalized still. 

[trents]

It is common for celiacs to develop intolerance/sensitivity to other, non-gluten foods. Chief among them are dairy and oats (even gluten free oats) but it could be almost anything. So, keep an eye out for cross reactions like that.