Going Gluten-Free: Progress Thread :)

[Pacificfords]

I am starting a new journal to keep track of my experience going gluten-free. I decided to list the symptoms that I have been dealing with these past months, some of them for a couple of years. The doctors have already diagnosed kidney disease, but they are unsure of secondary issues. Two doctors think lupus, one thinks rheumatoid arthritis, and I am currently scheduled for an upper and lower GI to rule out colon cancer... celiac disease... or whatever else might be happening. I am not scheduled to get confirmation on the other autoimmune diseases until May... that was the soonest they could get me in. I am tired of waiting on doctors and I am tired of them guessing as to what I have... it is time to take things one step further and try to regain my health.

So... I am going gluten free, eating a very limited McDougall diet due to the kidney issues... and I am going to share my progress here to see if some or all of these symptoms are alleviated by the change in diet. I am not currently being treated specifically for any of these issues except blood pressure medication and Vitamin D supplements.

Today is my first day of being truly gluten-free. 12/16/2010
Here is the list of symptoms:
■Irritability or depression
■Severe Anemia
■Stomach upset
■Joint pain
■Muscle cramps
■Tingling in the legs and feet (neuropathy)
■Weight loss/gain
■Diarrhea
■Abdominal cramps, gas and bloating
■General weakness and fatigue
■Hair Loss
■Rash (similar to sunburn on lower legs)
■Severe Edema
■Blisters in mouth
■Brittle nails
■Easy Bruising (lots of bruises)
■Insomnia
■Vitamin D Deficiency

[Pacificfords]

I meant to also keep track of my weight in this thread. I weighed in this morning at 315.

I am kind of amazed already, after just a day of eating gluten-free McDougall... I am feeling much better. That wasn't so surprising, but my rash is completely gone. It was bright red this morning... now... my legs are back to their normal color. I don't know if this would have happened anyway, but I am happy to see it gone. The edema has gone down a little as well. My legs are still swollen, but not as bad as they were yesterday at this same time. That feels good.

I have had a very simple menu today. I had plain white rice and a mix of cauliflower and broccoli with a little sweet and sour sauce for breakfast with a cup of red grapes. I had about 2 ounces of cashews (two separate times during the day) because, as long as I watch my sodium, it won't affect my ability to lose weight at this point. I had potatoes mashed with a small amount of almond milk and a banana with peanut butter. The addition of the nuts is intentional right now because it satisfied both my craving for fat and salt and it falls within healthy guidelines for me. I will slowly wean myself off of the nuts and seeds as soon as my weight loss slows. I don't expect to eat anything else tonight... I have reached my protein limit for the day. I stayed way under my sodium limit.

I feel less foggy than I have in days! That is good as well. My moods have been very dramatic lately... anxiety and just feeling incredibly frustrated and angry for no real reason. It feels good to feel better. Feeling great about this new plan.

[chewy]

are you avoiding oats and corn?corn is gluten-free but jsut curious if you re avoiding it too.will you stick to rice,vegetables ,fruit and legumes?glad you feel better already.

[Pacificfords]

are you avoiding oats and corn?corn is gluten-free but jsut curious if you re avoiding it too.will you stick to rice,vegetables ,fruit and legumes?glad you feel better already.

I am eating corn, although not daily like I was before. No oats because I didn't really like them anyway. Basically rice, veggies, fruits and then some nuts and sunflower seeds. No legumes - they are really high protein. I forgot to add something to my menu earlier... I had 1/2 cup of vegetarian baked beans on my mashed potatoes. They aren't too bad with the protein as long as I limit them and they are delicious. I did feel like I needed to eat something different tonight... but it was a craving and I was NOT hungry at all. I think I will start drinking hot tea for those types of cravings. It is really all about building new habits that will last...

[RRC]

Hi Pacificfords,

Looks like great posts! Your symptom list sure looks like celiac to me. I have found ginger to be a great inflamation reducer. When I first went gluten free, I was drinking ginger juice in a blend of apple and carrot juice, but it could easily be added to tea. Watch for herbal teas. I was glutened by a Celestial Seasonings herb tea and will not drink that brand again - undeclared barley. Plain teas are supposed to be alright. Holy Basil tea is awesome. Very calming and settles the tummy. It;s really helping me with my anxiety and insomnia right now.

I look forward to reading your progress. If you want, you can PM me any time. It's good to have someone to share with. For me too.

RRC

[Pacificfords]

Hi Pacificfords,

Looks like great posts! Your symptom list sure looks like celiac to me. I have found ginger to be a great inflamation reducer. When I first went gluten free, I was drinking ginger juice in a blend of apple and carrot juice, but it could easily be added to tea. Watch for herbal teas. I was glutened by a Celestial Seasonings herb tea and will not drink that brand again - undeclared barley. Plain teas are supposed to be alright. Holy Basil tea is awesome. Very calming and settles the tummy. It;s really helping me with my anxiety and insomnia right now.

I look forward to reading your progress. If you want, you can PM me any time. It's good to have someone to share with. For me too.

RRC

Wow... I hadn't even considered tea could have gluten. I really have much to learn. When you say "undeclared barley"... what do you mean? Was it on the label or did you find out another way? Was it listed as another ingredient?

Another update:
I am up in the middle of the night because I was so exhausted I went to bed at 6 pm last night... now at 3:00 am... I am wide awake and feel great. lol... I wasn't expecting to sleep so good and feel so good. My legs look almost back to normal... I kept my sodium very low yesterday. I still have the horrible itching on my legs though... last night it was really bad. They kept trying to tell me that it was phosphates... but my phosphorus is normal, so I suspect it may not be that.

All in all.. I feel so much better just after one day - it is amazing. I am grateful to be back on track. I also appreciate all the support from those of you that are writing in my journals and the many that are sending messages. It is really powerful to have so much support and it makes a huge difference. Thank you... ~Debi

[RRC]

Really, I suspect the barley. It is often used as a flavouring ingredient or some kind of binding agent. I suspect it was covered under "natural flavouring." Plain teas are supposed to be ok. Just watch the flavoured ones. You can always add you own vanilla, cloves, cinnamon, lemon juice etc. Bigelow has some gluten free teas and Twinings is supposedly ok. You really have to be careful and research all the packaged products you use. If you can't find out what you need, then ask the company. If they don't answer, then don't use it. I will aften boil ginger slices in water and add lemon juice or boil up some spices like cloves, cinnamon, cardamom pods all by themselves and sweeten with a bit of honey. Very satisfying.

When in doubt, go without.

Make sure your medications and your supplements are gluten free. Even if it says gluten free on the label, you want to double check with the company. The gluten free statement means that they don't intentionally add any gluten containing ingredients but it does not always mean that they test the products for the presence of gluten or that they test their raw materials. There are a few gluten free supplements in the US and couple are even certified by the Gluten Intolerance Group (They are a good resource for product information). I order my iron, B12, and D from Freeda Vitamins but Country Life is certified gluten free.

Have you considered arranging a consultation with Jeff Novick? or perhaps he could recommend some one else? Since your diet is so limited, perhaps you could use the CRON-o-meter to track your food/nutrient/calorie intake. It's a bit of work, but it might be well worth it for a little while just to be sure that you are covering all the bases.

When I went gluten free last year, it seemed like I had to pee all the time.

Living Without magazine is a good place for information, but you will also find some very tempting recipes that will drive you mad. So proceed with caution.

Yeah for a good sleep!

RRC

[Pacificfords]

Thanks for the info RRC. It is very overwhelming going gluten-free. I thought I had a challenge before... ha! I am keeping it very simple right now and doing lots of research.

I didn't even think about my supplements. Do I need to worry about prescription drugs? I am not taking anything right now that hasn't been prescribed.

My favorite tea is Twinings Herbal Unwind. It says the ingredients are honeybush, natural orange and mandarin flavours with other natural flavours. I suppose the "other" is the part you have to wonder about.

It will definitely take some time and research to learn all there is to know about being gluten-free.

[RRC]

Call your pharmacist. They will be able to help you find out. Then way the potential for harm. I take Synthroid. From what I've been able to learn it cannot be guaranteed to be gluten free. All the ingredients listed are gluten free but....? I've decided for now to keep taking it. I've taken it for 14 years and sometimes changing can be a problem. The pill is so small that the amount of gluten in it may not cause too much trouble. I've never reacted to it. Not like I did when I had a few drops of liquid smoke in a huge pot of pea soup!

Companies need to declare wheat as one of the top 8 allergens but not barley.

The internet has been a great resource. Most companies have a website with contact information. The days of spontaneous buying are over. I believe Twinings teas are OK. But look it up. I started a food diary so I could look back at what I ate and track down culprits. It really helped as sometimes there is a delayed reaction.

RRC

[RRC]

Oh yeah, don't buy anything from bulk bins either. They never wash the containers and they use them interchangeably. There is likely traces of flour and other grains. Too risky.

[RRC]

Just checked Twinings Tea website. They state in FAQ: all Twinings Teas are gluten free.

[Pacificfords]

Today was a great day. I did eat something that I wish I hadn't, but I really need to learn how to use spices in things. I made a soup with onions sauteed with water, almond milk and more water, chopped golden potatoes and corn. It was so totally bland, so I added some chicken boullion (low sodium). I didn't have any veggie broth. It said it had no protein... super low fat... but not the best alternative. However, it kept me on track today because the soup tasted much better and that was my lunch and dinner. I didn't eat any fruit... and had a few veggies but not many. The potatoes took all my potassium for the day - so I have to alternate potato and rice days.

I need to find a few things that I really enjoy eating and stick with those few things. My legs look so much better... almost back to normal. Not eating the gluten feels really great. I think that even if I don't have a positive test for celiac disease - I will probably leave it alone for a while... my sister was telling me that she tested for a wheat allergy a couple years ago. She left it alone for a year or so and then gradually added it back in occasionally to her diet and hasn't had any problems. So... it seems likely - regardless of what the doctors say. How I feel and my labs will be my answer!!!

[veggielibra]

These are fantastic posts. I'm very sorry you have so many symptoms and seeming autoimmune issues. Thank God for Dr. McDougall as McDougalling makes the transition to gluten free easier.

I haven't been the same since having my second child and I just want to start feeling better. I finally realized that I might be gluten intolerant as well. I had a positive ANA text for the start of Lupus tests years ago but then switched my diet so I never went back for further tests as I was feeling a ton better by switching foods. I also had RA which improved with food.

That's why I suspect a gluten intolerance brought on by pregnancy isn't out of the question and I just did day 1 of GF.

I am/was a big Quaker Oats breakfast person but I read that is questionably GL because of contaminants. So, I'm switching to quinoa for breakfast, sweet potatoes and rice for other meals.

What about beans - they are a probably with GF? I just figured that out from your posts. What do you know about them?

And, finally, I hope you've found some food that works for you and just stick with it

[Pacificfords]

I thought that I would update this journal now that I have an official diagnosis for Celiac Disease. It is amazing how much damage this disease has caused my body and how many symptoms I have. It is a bit overwhelming for me because I started researching the disease just two days ago and realize how much I don't know. My first gluten free day was the 20th of January. I thought I did great and I ate rice and veggies, rice cakes and peanut butter. Then... I woke up Friday morning and was doing some reading... realizing that three of my medication had gluten. I stopped those and called my doctor. The food seems the easiest change to cope with because it isn't a huge difference from what I have been doing. However, it occured to me this morning to check my shampoos, conditioners, bath soaps, toothpaste, etc., etc. Unbelievable. I tossed them all.... even my chapstick. It is a bit overwhelming at this point, but I am just going back to basics with everything. I have the skin rash that goes with the disease, so that is why I find myself checking every single thing that comes in contact with my body. It will be a good change and I look forward to the changes and the health it will bring, but really... I had no idea how many things contained gluten. It will be a good change for my whole family. We are ditching the cleaning products and going all natural as well.

There is lots to do... so much to research and many, many labels to read. Understanding that gluten is hidden in many different ingredients made everything much more complicated, but if I just keep the food simple for now, I am confident in that aspect. Basically no processed foods that I am not positive are gluten free. Fresh or frozen fruits and vegetables. Rice! Lots of rice... Still having to protect the kidneys, so I have to keep things in balance.

That's about all for now...

[kirstykay]

I just read about your new challenges! Wow! You're really taking control of your health! It sounds hard, but worth it. I was just thinking about you and wondered how it's been going?