Some advice please

[Alison Orchard]

I was diagnosed with coeliac disease 3 years ago and lymphocytic colitis almost a year ago.

I joined this site soon after the latter diagnosis and, based on what I read, I decided to try and control the symptoms by diet. I was already gluten free but I then also cut out dairy (except butter, assuming there was very little casein in butter) and soya.... and it worked! Life was good for 6 mo or so, I had more energy and put on weight.

Sadly I now have a return of the symptoms (for me some D, abdominal and back pain, nausea, headaches and numbness in my mouth, muscle weakness, hot sweats). I can see that it fits into the pattern suggested by Tex's book and that I am working through the foods I react to.

I feel so poorly that I am planning to visit my doctor this week to try budesonide. So my first question is, is there anything about taking it that people think I should know?

I will remain on my diet though and won't stop trying. So second question, what food would you suggest I try next? I notice some people say they are EF. What's that?

I feel sorry that I haven't visited the site whilst I was well to help others. I wonder if we could get some kind of UK support group going?

Best wishes to all and thanks for being there, Alison

[JLH]

EF is egg free.

[Zizzle]

Hi Alison!
Which gluten free grains are you eating? There is good research showing that patients with refractory celiac disease (not getting better on GF diet) can get better if they adopt a grain-free, no processed food diet, similar to Paleo. There is concern over wheat cross-contamination in several grains (especially sorghum, oats, and corn), and then there are people that have celiac-like reactions to the various (non-gliadin) glutens produced in these grains. For example, I learned pretty quickly that I react to buckwheat and amaranth. I also have cross-reactivity to sesame seeds. I went grain free for a month and a half and felt better, and have only reintroduced rice and tapioca (not a grain, a tuber).

I also wasn't very strict at avoiding soy in the past, allowing foods cooked in soybean oil, or processed with soy lecithin. After doing this Paleo Autoimmune Protocol elimination diet, I had something with soy lecithin and had a strong reaction, so now I know soy was doing more damage than I knew.

I'm egg free, nightshade free, and nut free at the moment too, but hoping to reintroduce them soon. I know I react to walnuts, I'm unsure about almond, and I think cashews are safe for me. Spicy peppers have always caused me trouble.

[tex]

Hi Alison,

I'm sorry to hear that you're having symptoms again, and that they have become so severe. In that situation it's always a good idea to double check to see if there might possibly be some way that gluten, dairy, or soy is cross-contaminating your diet. All it takes is a trace, such as can happen when someone else uses wheat flour in the same kitchen where you prepare your own food. Or, you might need to avoid all sources of casein, including butter. Some people can tolerate clarified butter (ghee); it's a much safer form of butter.

And Zizzle is quite correct that cross-contamination in grains is very common. Even with pure grains, many of us do much better if we avoid all grains.

Yes, sensitivity to eggs is fairly common among the members here, so eliminating eggs from your diet would surely be worth a try.

The numbness in your mouth and muscle weakness that you mentioned concerns me. That suggests one of 3 possibilities:

1. a vitamin B-12 deficiency

2. an adverse reaction to a medication, such as a statin

3. a mast cell problem involving inappropriate mast cell degranulation (to release histamine) in response to certain foods in the diet.

If number 3 is the problem, then you might need to avoid foods that contain high levels of histamines. It's also possible that taking an antihistamine might help.

Budesonide works well for most people. Some of us cannot tolerate it because of the possible side effects, however. It's impossible to predict in advance whether or not it will work well for you.

Good luck with this, and please keep us posted.

Tex

[Zizzle]

D, abdominal and back pain, nausea, headaches and numbness in my mouth, muscle weakness, hot sweats

Your muscle weakness and hot sweats concern me too. Have you been tested for autoantibodies to determine if you're at risk for other autoimmune diseases? You might be starting an autoimmune flare of some sort. Where are you noticing muscle weakness?

[Alison Orchard]

Hi Alison,

I'm sorry to hear that you're having symptoms again, and that they have become so severe. In that situation it's always a good idea to double check to see if there might possibly be some way that gluten, dairy, or soy is cross-contaminating your diet. All it takes is a trace, such as can happen when someone else uses wheat flour in the same kitchen where you prepare your own food. Or, you might need to avoid all sources of casein, including butter. Some people can tolerate clarified butter (ghee); it's a much safer form of butter.

And Zizzle is quite correct that cross-contamination in grains is very common. Even with pure grains, many of us do much better if we avoid all grains.

Yes, sensitivity to eggs is fairly common among the members here, so eliminating eggs from your diet would surely be worth a try.

The numbness in your mouth and muscle weakness that you mentioned concerns me. That suggests one of 3 possibilities:

1. a vitamin B-12 deficiency

2. an adverse reaction to a medication, such as a statin

3. a mast cell problem involving inappropriate mast cell degranulation (to release histamine) in response to certain foods in the diet.

If number 3 is the problem, then you might need to avoid foods that contain high levels of histamines. It's also possible that taking an antihistamine might help.

Budesonide works well for most people. Some of us cannot tolerate it because of the possible side effects, however. It's impossible to predict in advance whether or not it will work well for you.

Good luck with this, and please keep us posted.

Tex

Grains: I don't eat barley, rye, oats or wheat but eat all other grains, especially buckwheat which I have in a muesli every morning. I may try eliminating all grains next. What do you think might be better to try first - eliminating all grains or eggs?

I haven't been worried about the sweats, weakness and numbness since they were symptoms that I had before I was diagnosed with coeliac disease and which went when I first went gluten free. I am due to see my doctor early next week so I can discuss it with her.

I am not on any statins and last time my B12 was measured it was fine but the histamine option interests me because I am allergic to wasp stings and, when I got stung in the summer, I had to go on a longish course of anti-histamines and felt really well. I assumed it was because my body was sending all the white blood cells to that rather than my guts.

[Alison Orchard]

D, abdominal and back pain, nausea, headaches and numbness in my mouth, muscle weakness, hot sweats

Your muscle weakness and hot sweats concern me too. Have you been tested for autoantibodies to determine if you're at risk for other autoimmune diseases? You might be starting an autoimmune flare of some sort. Where are you noticing muscle weakness?

My muscle weakness is mostly in my leg - my left leg

No I haven't been tested for autoantibodies. I didn't know that was available. Can you tell me about it? Does anyone from England know if it's available on the NHS?

Thanks to everyone for their help, Alison

[Alison Orchard]

Hi Alison!
Which gluten free grains are you eating? There is good research showing that patients with refractory celiac disease (not getting better on GF diet) can get better if they adopt a grain-free, no processed food diet, similar to Paleo. There is concern over wheat cross-contamination in several grains (especially sorghum, oats, and corn), and then there are people that have celiac-like reactions to the various (non-gliadin) glutens produced in these grains. For example, I learned pretty quickly that I react to buckwheat and amaranth. I also have cross-reactivity to sesame seeds. I went grain free for a month and a half and felt better, and have only reintroduced rice and tapioca (not a grain, a tuber).

I also wasn't very strict at avoiding soy in the past, allowing foods cooked in soybean oil, or processed with soy lecithin. After doing this Paleo Autoimmune Protocol elimination diet, I had something with soy lecithin and had a strong reaction, so now I know soy was doing more damage than I knew.

I'm egg free, nightshade free, and nut free at the moment too, but hoping to reintroduce them soon. I know I react to walnuts, I'm unsure about almond, and I think cashews are safe for me. Spicy peppers have always caused me trouble.

What's the nightshade foods?

[tex]

What do you think might be better to try first - eliminating all grains or eggs?

If I were in that situation I would try eliminating eggs first.

Incidentally, buckwheat is not a grain, it's a seed. It's related to rhubarb and sorrel.

Tex

[gluten]

Hi Allison, You stated that you have muscle weakness in your left leg. Which muscles are effected? Do you trouble with stairs or getting out of a seat? Jon

[DJ]

Taking budesonide:
Take it at the same time every day. Set an alarm so that you won't forget. It's important.
Take it with a full glass of water.
Start out with a high meat/low fiber diet.
Don't just stop taking the medication. Wean off by reducing the dosage.
If you have a bit of diarrhea when you reduce the medication, decrease fruits and veggies and increase meat until you restabilize.
Also, read the book. I need to read it again too

[Alison Orchard]

Dear all,

Thank you for your replies.

I shall wait and see what my doctor says on Monday, make my decision and go from there. I shall let you know how I get on.

Gluten, I am a pretty fit person so, for me, muscle weakness means running 2 miles rather than 8. So, getting out of a chair is no problem. The weakness is in my thighs, the quads, and they ache when they haven't worked nearly as hard as usual; going upstairs burns in a way it shouldn't.

DJ, which book are you referring to?

[Zizzle]

I am a pretty fit person so, for me, muscle weakness means running 2 miles rather than 8. So, getting out of a chair is no problem. The weakness is in my thighs, the quads, and they ache when they haven't worked nearly as hard as usual; going upstairs burns in a way it shouldn't.

Alison,
I am not at all suggesting you have what I have, but just thought you might want to know that proximal muscle weakness, namely of the upper thighs, hips, and shoulders, is the classic presentation of Dermatomyositis and other forms of Myositis. In the early stages, patients notice weakness or pain climbing stairs. Eventually it can be tough to raise hand above the head, get out of bed, etc. Keep an eye on the muscle weakness and report any worsening to your doctor.

[Leah]

Welcome Alison.
The book that people are referring to is the one Tex wrote. A picture of it is in the upper right hand corner of this page. If you click on it, you will go straight to Amazon. it's great and chock full of all the information you are seeking.

Once you test eggs ( fortunately, I can eat them), you might want to test each grain separately. I can eat rice and corn with no problems, some can't.

I was on Budesonide for 6 Months. It worked great for me. Some of us have side effects, but I didn't. The thing is that it will make the D go away, but it can mask reactions to foods. Once I weaned slowly off of it, I found out that the peanut butter i was eating ( and all soy) was giving me problems. As long as you know that it doesn't cure to heal you, and that it's the diet that does…. then it's good for allowing you to live your life while you work on the diet.

The other thing is that you should be staying away from fiber foods. Our inflamed guts can't handle it and eating it can put off healing. It's like sandpaper on an open wound. So, RAW FRUITS AND VEGGIES ARE OUT FOR NOW, AS IS LEGUMES AND SUCH.

nightshades are tomatoes, white potatoes, peppers, and eggplant. I can eat potato, but not the others. Go figure.

it takes time to figure it all out and heal.

good luck and keep us posted
Leah

[Alison Orchard]

I have Tex's book so I shall revisit it.

Thanks for all your advice and support.

Alison