Recently diagnosed, complications.

[Naomi94]

Hey there, very new to this having only getting my official diagnosis of celiac disease yestoday after years of trying to explain something isnt right. 

Unfortuntly i also have a rare blood condition called spherasitosis (please excuse my spelling). This condition means my red blood cells are mishaped, and therefor cant carry out normal blood functions like cleaning toxins etc. In turn i have a very low immune system with ongoing issues with my kindeys, liver and splein. I also had my Galdbladder removed years back so i already have limitations on what i can and cant eat.

I already am unable to eat any red meats, anything to high in fats, battered or fried. Iv followed the diet plan regarding my blood condition for years. After finding out i have celiac disease im really struggling with finding foods to eat. Iv had dizzy spells in the past 24 hours as well as feeling sickly, im trying to eat lots of fruit and glutten free snacks but im not feeling full, i have no energy and i keep feeling faint and zoned out. 

I understand its very new, but im really stuggling with trying to manage both conditions to the point iv been in tears, i feel so deflated and trapped, please any advice?

[GFinDC]

Hi,

Recovery from celiac damage can take months to years.  The recovery time is variable depending on many factors.  A good way to start the gluten-free diet is to stick with whole foods you cook at home yourself.   Don't eat out and avoid processed foods, including gluten-free processed foods.  Meats, veggies, nuts, fruits and eggs are good choices.  Often people can't digest dairy for the first few months.  So try cutting that out and also oats.  You can always try adding foods back into your diet after you are healed.

Edited February 11, 2020 by GFinDC

[Fenrir]

I'm familiar with spherocytosis. I worked in a hematology lab for many years and have helped Drs. diagnose the condition by microscopically examining the blood for spherocytes. 

The main issue with spherocytosis is that it makes your red blood cells fragile and they tend to pop easier causing hemolytic anemia. hemolysis is basically just the red cells popping releasing the liquid portion of the cell (hemoglobin) into the blood stream. The problem with that is that hemoglobin has a lot of protein in it and when the body sends it through the kidneys, liver, and spleen it damages them. It also results in lower hemoglobin which in turn means you are less able to circulate oxygen around the body and that will cause fatigue. 

Now, I'm not a doctor but some people require their spleens to be removed. It's important to keep your ferritin levels up because sometimes if you're anemic the body will replace cells too quickly which results in immature red cells going into the blood stream. Immature red cells are large so they can cause all sorts of issues. I would check with your doctor about any other possible treatments if you haven't already discussed these.

For celiac I suggest newly diagnosed folks stick to fruit, veggies, and meat. For you stick to fish and chicken breast for the lower fat content. I would avoid gluten-free snacks, they are generally very low in nutritional value. So, just avoid processed foods. If it comes in a box, don't eat it for right now, until you start feeling better. Go whole foods, fruit, veggie, meat with seasonings. No sauces unless specifically labeled gluten-free. 

Also, nuts are a good snack but are high in fat and if you're having trouble processing fat after you gallbladder was taken out then I would avoid nuts. Plus you have to be careful with nuts, many brands say they are processed on equipment used for wheat products so be sure to read labels if you decide to eat nuts. 

[NNowak]

First of all, please don’t feel defeated. It’s wonderful you have a direction now that you’re diagnosed. I was diagnosed 25 years ago immediately following my gallbladder removal. Subsequent food sensitivities were identified, such as; dairy (protein allergy), sugars (eliminates most fruits), sugar alcohol (in sports drinks and vitamin water, etc), white starches like rice and pasta, corn, nuts, potatoes and beef. I had gestational diabetes with all 4 pregnancies so that restricted me. I’ve recently found several vitamin deficiencies and an iron overload. The docs can’t agree on what I can/cannot eat - and I have malabsorption, so it complicates things further. I’m healing after a flare and am back in the gym daily, so I’m doing something right. 
 

I tell you all that because ultimately you will know what your body needs. Learn as much as you can about the gluten free diet and stay 100% gluten-free. Start with foods you know to be safe, tasty and nourishing. Stay away from all processed foods, with the exception of gluten-free bread. Cook more than you need to so you can make meals easy to warm up later. I eat a lot of fresh fish broiled or grilled, baked chicken (I prefer legs and thighs), pork tenderloin, eggs and toast, baked potatoes with butter (occasionally), asparagus, brussel sprouts and broccoli. I have 2 servings daily of bone broth in a chocolate shake with a Tblsp of organic coconut oil. This heals the GI system to aid in eliminating inflammation while promoting absorption. The coconut oil is a MCT which will make you feel like you’ve eaten enough, eliminating hunger. I use the bone broth and collagen from Dr. Axe online, and Kettle and Fire if I’m needing something warm to sip on. 
 

You will find your groove soon enough. Take it one day at a time and simply do your best. Pop back on the forum if you have questions or need meal ideas.  I have a celiac son and NCGS daughter, so I learned early on how to come up with food that tasted better than regular - chicken nuggets, mac n cheese, Boston cream pie, apple crisp and fancy cakes for parties. 
 

As with most challenges in life, your positive attitude will bring a positive outcome. Don’t be afraid to ask for help. Good luck!

[cyclinglady]

Excellent advice from all!  

I just want to say that things will improve with healing.  I have Thalassemia, which is tiny red blood cells.  It is genetic, but when my celiac disease was active (undiagnosed), I also had iron deficiency anemia which just compounded my problems.  

I also had my Gallbladder removed because it was non-functioning (0%) and infected.  Once healed from celiac disease, I was able to consume fats.  So, this might happen to you!  

Hang in there.  Eat real food.   It will expedite your healing.  Any studies to support that theory?  No, but plenty of members advise this for a good reason.  It works.