Log in
Gluten Free Guerrillas
9,056 members3,704 posts

Celiac and Other Autoimmune Disorders.

Hi,

I am at the end of my tether.

In 2009, I was diagnosed with Celiac Disease after my bowel completely shut down, endangering my life. My only symptoms were low folate levels and irregular headaches. Doctors were treating for both symptoms but didn't investigate further.

I'm worried about getting other Autoimmune Disorders such as diabetes. Is there any genetic testing available to rule this out? My glucose levels come back normal when doctors check for the monthly average. However, this does not give me peace of mind.

My current symptoms are:

Excessive Hunger.

Constant Headache.

Constipation.

I have a reasonably unhealthy diet, gluten free cake x 2 or 3 times a day, ice cream x 2 times a day, no fruit, barely any vegetables, red meat / gluten free crumbed fish. The only good thing is that I ONLY drink water and (milkshakes, once in a blue moon). I have IBS so I find high-fibre foods a problem. I have tried the Paleo diet and the FODMAP diet, on my dietician's advice.

However, I am underweight and this diet is not helping weight gain. My BMI is not calculable. I'm reasonably active as due to a neurological disorder, I can't stop moving.

I hope somebody can help me.

Thanks

Unisailor

11 Replies
oldestnewest

Hi mlk24,

Unfortunately I can't answer the autoimmune part of your question very well, so instead I'll focus more on the other things.

Do you like eating nuts? They are high protein and high calorie food. There's also quite a selection to choose from. For example, you could be a person who likes Brazil nuts and walnuts but not peanuts (or visa versa). If you like the easier option, spreads like peanut butter and cashew butter might be more suitable.

As you probably know, high-protein foods will keep you fuller for longer. That's why I usually have a double egg omelette for breakfast.

Has your GP discussed with you the possibility of prescribing fortisips and fortijuices; given what you say about your personal circumstances? I know that fortijuices in particular are labelled as gluten free. They do contain milk proteins though - so do you know if you have any secondary intolerances such as to dairy? (by dairy I mean to dairy proteins and/or lactose). Sometimes other intolerances will be the of cause headaches and maybe aggravating your IBS.

It also looks like your diet is fairly high in sugar. These foods will cause your blood sugar to spike and then crash. It's often the crash that makes you feel hungry again.

You also mentioned that you can't stop moving. Has this been fully investigated/reviewed recently? Could your neurological condition be contributing to your headaches?

Reply

I was born with my neurological condition (dystonic cerebral palsy). It affects my muscles - I have no control over my muscles hence the constant movement. It is supposed to be static - my level of ability / disability / symptoms should not change over time. The doctor suggested (11 months ago) that my muscles tightness could be a factor relating to my headache and suggested I tried Botox. I'm still waiting for that and have my doubts as I have used Botox before, for muscle tightness, unsuccessfully.

I try avoid hard foods such as crackers and nuts. I have the tendency to choke so I prefer not to risk it.

I'm a very slow drinker so Fortisips are not the easiest things. I'm not technically lactose intolerant but I do think lactose affects my IBS. For this reason, I now use lactose free milk and use medication if I can't avoid eating lactose containing foods. The interesting thing is that my IgE registers between 700 and 900. I have no idea why this is.

There's no academic literature relating cerebral palsy and celiac disease so I must be extremely unlucky.

Reply

There may be some papers on PubMed.

ncbi.nlm.nih.gov/pubmed/229...

Perhaps you need to take a probiotic if you aren't already.

Reply

Hi Mik24

As far as I understand, there are too many possible genetic variations in diabetes to make testing a possibility. There is a genetic component in type 1 and type 2 diabetes, you will know if anyone on your family has diabetes, but your environment can play a part. Blood glucose levels are the usual test.

As Regalbirdy has said, the high sugar foods you are eating may well be making you feel hungry and possibly giving you headaches. Too much of this type of food may also make you more liable to develop type 2 diabetes.

IBS can be very difficult to deal with. Are you aware of the different effects of soluble and insoluble fibre? Soluble fibre can sometimes be tolerated better than insoluble, I know I have to get the balance right between the two, to avoid constipation.

The Paleo diet, in its more extreme form, can consist mainly of meat, broth and fat, (with some greens if you can tolerate them) and seems to work for some people. Have a look at Paleohacks and similar sites.

Good luck with sorting this out.

Reply

It might be the continue consumption of gluten in the gluten free diet that is your problem. Remember the gf diet may contain 20ppm.

1 like
Reply

I agree with this. This is anecdotal rather than scientific but my experience with becoming gluten intolerant was that I started to massively crave biscuits and crisps and put on four stone in a relatively fast period. Once I totally gave up gluten this need for sweetness went away but if I accidentally eat gluten I develop short-term cravings to the point where I'll eat the sugar out of the back of the cupboard! I suspect the gluten somehow disrupts my blood sugars.

If you're eating a lot of processed gluten-free cakes and biscuits, you're likely to still be consuming a low level of gluten and it may be triggering a similar desire for sugary foods. If you can't give up the sweet stuff immediately it might be worth switching to less processed/homemade versions so at least you know what's in them and can keep the gluten out.

Reply

Hi Mlk 24, firstly at least you are aware that you have a problem and need help and now you've asked for help so good for you.

It does sound as if your villi has not recovered properly yet so you could well be suffering with malabsorption so stick with the diet and keep off the dreaded gluten as you might feel why bother but staying gf is imperative to a full recovery.

Another thing to bear in mind is that we are what we eat and one reason that you could feel hungry all the time is that you body is crying out for nutrients and nutrients from real food so you have answered one of your questions your self and the cakes would be OK between meals and proper meals that mean you're getting a balanced diet plus extra calories to help you put on weight.

Your Gastro/ GP can give you a simple test for diabetes and there's a simple hydrogen breath test for lactose, as rightly pointed out by others your diet is giving you sugar spikes so why torture your body like this and try a bland but healthy diet so you are getting carbs from food like a baked potato and your body NEEDS the vitamins and minerals from fresh veg so you do need to make dietary changes and will reap the benefits.

Lactose is a funny one as the older we get the less our bodies seem able to break it down and absorb it, another thing to bear in mind is that cows milk molecules are much larger than human milk molecules so have to be broken down in the stomach before they can be absorbed, goats milk tho' not lactose free is the same size molecularly as human milk, so much easier for us to absorb. And if your villi is still recovering you may well be suffering from a temporary lactose intolerance.

So my advice is to focus on what you can do to improve your health and wellbeing and eat your self healthy and you could easily have raspberries with your ice cream and you will soon find that it is easy peasy introducing healthy foods to your diet and have a banana between meals sometimes.

Lastly you have taken the first step now take another by eating healthy foods.

Thats my 2p's worth.

1 like
Reply

The dreaded "gluten free" always remember that this diet may include up to 20ppm of gluten. My villi(gut) is normal but I have reduced folds,d2. Be careful of ice creams and other foods that may contain"gf" levels under different names. Best advice is cook from fresh avoid any ingredients from a gluten source, keep a food/symptom diary and when well enough reintroduce foods, noting reactions.

Reply

Hi

If you want to look at other auto immune issues your body may be susceptable to you need to look at Cyrex Array tests, I think it may be number 5, but in any event the info will be on their website, just type in cyrex labs. However, it is somethig that you will need to pay for privately as it is only tested in This one lab in America, but the process is easy enough. You will need to go through a licenced practitioner to access it, so if you don't use one already, try purehealth clinic run by Micki Rose.

There is also a book by Sarah Ballyntyne about the Auto Immune Paleo diet, it is sooo useful & by reading that it may give you more direction and help about tweaking further with your diet to help your specific problems. Good luck.

Reply

Hello there,

Even though you are cutting out gluten, you will have accumulated nutrient deficiencies while you were eating gluten, and your current diet might not be good enough to restore them.

Headaches can be made worse by low magnesium levels, for instance, and to get enough magnesium from foods, you would need to eat a lot of vegetables.

I know that when my iron levels are out of line that I get terrible food cravings. Red meat is the best source of iron, and you said you're not eating much of that.

You have probably been tested for things like iron, but in my experience doctors often ignore the early stages of a deficiency, and tell you that you are "normal" .

It might be that you need some supplements to get you over some of these problems. However you go about it, it sounds to me a though your body needs more nutrients.

Reply

Unisailor it sounds like you have answered your own question as you say yourself your diet is bad. Why so bad? Surely more fruit & veg that didn't irritate your IBS would help many of your symptoms?

Reply

You may also like...