Celiac and Neuropathy

[Fairy Dancer 10]

Ok, I am not diagnosed as celiac although I have a brother who is. I did have a blood test months ago (whilst I was trying out a gluten free/paleo influenced diet for health problems that have lead to my being housebound and bedridden most days including IBS type symptoms with uncontrollable diarrhoea, migraine headaches, CFS type symptoms (fatigue, brain fog, vertigo, migraine headaches and other neurological type stuff) but as the test came back negative for celiac so I went back on the gluten again. Queue a severe relapse after a slight (very slight) improvement after going gluten free.

Some months later due to be sick and tired of feeling sick and tired I am trying gluten free again and have now gone full blow paleo. First I took out wheat and kept dairy. Slight improvement in diarrhoea but did not go completely. Took out dairy as well...diarrhoea disappeared. Bloating also went down but as I am overweight my stomach has deflated so much that I now have some spare tyre hanging where the skin has not gone back with it (darn).

Now the version of paleo I do is low carb so out went potatoes. Until yesterday when I decided to treat myself to one.

Result? Diarrhoea and an upset gut...from one potato? Ok I know my gut hates tomatoes so I don't eat them and the same goes for bell peppers but I thought I was ok with potato!

How many more foods is my gut going to object to and is there going to be anything left to eat soon? Do I now have an issue with nightshades too? How many foods can one person be intolerant to? Wheat, dairy and now nightshades!

ARrrrrrrggggggggggggggggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

Are my drs sure the blood test was accurate?

Also if my above issues are gluten related how long before all symptoms disappear as I have been off grains for a month now and whilst digestion has improved some I still get rip rawing migraine, vertigo, brain fog (its like early onset dementia) etc..how long before that leaves me alone to live a life?

[mushroom 1,209]

I am so sorry you are having problems with so many foods. It does sound like your blood test might have been a false negative - about 20-30% are - and that you have developed a leaky gut which lets larger than usual food particles through into the blood stream, where they are not recognized as 'self' and are treated as foreign invaders by the antibodies who are on guard for disease and infection.

If you have been off gluten for only a month you are just beginning the healing process. As for how long this will take, and how many foods you will have problems with, the answer is "How long is a piece of string?" We are all unique and heal and suffer differently. If you find that more and more foods are off limits to you it is time to set about healing your leaky gut. The first step is a good quality probiotic (dairy-free) to repopulate your intestine with the 'good guys'. Some people find that taking L-glutamine helps with the healing process also. If you are now having normal stool and no more diarrhea, you probably don't need the third part of the regimen which is digestive enzymes to help break down your food.

Now let's address the foods. A temporary intolerance to lactose (milk sugar) usually goes along with celiac because the part of your small intestine which produces the enzyme to digest it has been destroyed by the gluten and has to grow back. That means you will not be able to digest milk, cream, ice cream, probably soft cheeses. You might be able to handle yogurt and some hard cheeses. If you do not handle these either you may also be intolerant of the dairy protein, casein, and this is more likely to be a permanent intolerance. You will have to do some experimentation with these.

Yes, tomatoes, potatoes, peppers, eggplant, chillies, paprika are all members of the nightshade family and you should eliminate them all - I would say for at least a year before you challenge.

There are many other food families - the legumes (beans, peas, soy, peanuts, etc.); other grains like corn, rice,, amaranth, millet, quinoa, buckwheat, sorghum. Some of these are true grains, some belong to other families but act like grains in he diet; tree nuts, citrus,

So right now you have lost gluten and part or all of dairy, and nightshades. It may seem like a lot considering what you are used to eating, and I know how significant the loss of potatoes and tomatoes is, but there are still oodles of foods left to satiate and satisfy you and tempt your palate. And the nightshades and dairy you may regain at some point. The important thing is to not lose any more foods. So, as much as you can, practice a rotation diet and don't eat too much of any one thing until you can heal your gut. Do not eat corn every day, like a tortilla for lunch and chips and salsa at night - try to limit things like corn to every three or four days so your body does not start saying, "Oh no, here that comes again!!" Try foods you might never never eaten before, like sweet potatoes and parsnips, rutabagas and jicama, use avocados and carrots on salads instead of tomatoes, eat rice and gluten free pasta for starches, try roasting vegetables like sweet potatoes, parsnips, squash, onion, zucchini, shallots. These make a delicious accompaniment to meats and make you forget all about potatoes and you can do them in quantity and just reheat them.

By the way, the neurological symptoms are slower to retreat than the GI symptoms, so you must try to be patient with them. They will vanish in their own good time

Best wishes on your new eating journey. Look at the recipe section for ideas, read the "What's for Dinner Tonight" thread and hopefully others will direct you to some other places for ideas.

[bartfull 569]

I was going to reply, but as usual, there's not much I can add to the great info Mushroom has given you. Except that I am just now coming out of the place you are at after a year. I'm finally healed enough that I am able to add back some of the foods I have lost. I'm hoping to get nightshades back eventually too because I LOVE potatoes. But in the meantime, there really are a lot of good tasting foods to substitute.

I just had a "cheeseburger" for lunch - home grown beef, extra-sharp cheddar, and because I can't have a bun, I mixed it in with a bowl of buttered rice. And you know, it tasted so good I can't wait to have it again.

It seemed for a while that it'd never get better, but it has. Hang in there. Before you know it you'll be feeling better, enjoying your food, and regaining some of what you have lost.

[Bubba's Mom 103]

Have you been tested for a small intestne bacterial overgrowth? (SIBO) I was reacting to more and more foods. It was crazy! I got tested and was told I have a severe overgrowth. The reactions come from toxins the bacteria emit after eating your food. It's very common in Celiacs, and those that are DXed with IBS.

Probiotics are 100% neccesary for a healthy gut. Digestive enzymes may help too? They also aid in kicking back the bad bacteria. Get on them..stay on them.

Best wishes to you for some healing!

[GFinDC 691]

You can be intolerant to very, very many foods. However some people are intolerant to a food for a time and then after that can eat it again without problems. So it may not be permanent. Testing every 8 months to a year or so is not a terrible idea.