allergy tests

[JohnSue]

Hi all. My wife, Sue 71 years old, has celiac disease. We from Pietermaritzburg. kzn. South Africa. Was diagnosed in 2018, after she had lost so much weight, we thought she had cancer. Did tests, scopes, found celiac disease. They said that Sue must of had it for a very long time, was only the 2nd patient with celiac that the specialist had seen. . Villi badly flattened. Went gluten free to the best of our abilities, labelling not as good as it should be. 3 years down the line, put on 3 kg, stopped yoghurt ? so weight constant. Sue is still suffering so much, stomach pains foggy brain, weakness unsteady. and neuropahthy . nothing seems to help.  Are these Food Allergy tests helpful.  Any help would be appreciated. To see Sue gong through so much pain. It hurts

[trents]

JohnSue, welcome to the forum! I am sorry to hear your wife is still suffering so after being diagnosed with celiac disease.

Studies show that most people who claim to be eating gluten-free really aren't. They are in fact eating a lower gluten diet than before. This is particularly true of those still eating out. Gluten can be found not only in food items but in meds and supplements since wheat starch can be used as filler in those things. Also, cosmetics can contain gluten so, particularly with those beauty products that come in contact with the lips and eyes (mucous membranes) need to be considered.

There is also the possibility that she has developed other food intolerances. Dairy is a common one but also eggs and soy. About 10% of celiacs react to oat protein the same way they do gluten. Studies have shown that for some people, the dairy protein casein causes villi blunting. Some medications like NSAIDs can cause villi blunting as well.

Concerning food allergy testing, you might look into the ALCAT testing method. Our forum administrator, Scott Adams, has an article on that somewhere on the forum. However, ALCAT often turns up a list of food intolerances longer than your arm and it can be discouraging. You have to eat something to stay alive so you would need to identify those foods for which the reaction is strongest and focus on those. The test does grade the strength of reaction to various food items.

Has your wife had any follow-up testing to see if the villi have recovered? That would be a good thing to look into so as to discriminate between gluten-caused symptoms and those that may be caused by other foods. It can take 1-2 years for the villi to fully heal after going on a strict gluten-free diet. Most cases of non healing villi are due to gluten still getting into the diet from unsuspected sources.

[Scott Adams]

I agree with @trents and it seems like your doctor may not be up on the latest with celiac disease, and perhaps her diet isn't 100% gluten-free, especially if you're eating outside your home. This article may help:

 

[knitty kitty]

23 hours ago, JohnSue said:

Hi all. My wife, Sue 71 years old, has celiac disease. We from Pietermaritzburg. kzn. South Africa. Was diagnosed in 2018, after she had lost so much weight, we thought she had cancer. Did tests, scopes, found celiac disease. They said that Sue must of had it for a very long time, was only the 2nd patient with celiac that the specialist had seen. . Villi badly flattened. Went gluten free to the best of our abilities, labelling not as good as it should be. 3 years down the line, put on 3 kg, stopped yoghurt ? so weight constant. Sue is still suffering so much, stomach pains foggy brain, weakness unsteady. and neuropahthy . nothing seems to help.  Are these Food Allergy tests helpful.  Any help would be appreciated. To see Sue gong through so much pain. It hurts

Celiac Disease results in malnutrition because those flattened villi can't absorb nutrients, hence the weight loss.  Dairy products can cause inflammation and damage to the villi just as wheat, barley and rye.  

Testing for vitamin and mineral deficiencies are part of proper follow up care for Celiac patients.  

Talk with the doctor about supplementing with the eight B vitamins, Vitamins C and Vitamin D, iron, magnesium and omega 3 fats.  

When insufficient or deficient, several of the eight B vitamins (thiamine, B12, niacin) produce symptoms of neuropathy, brain fog, muscle weakness, and unsteadiness with changes in gait or a wider stance for balance.  

Taking a B Complex supplement could help.  B vitamins are water soluble and can be easily lost with diarrhea or vomiting.  Our bodies can't store B vitamins, so we need to take them every day.  

Try cutting out processed foods.  Eat nutritionally dense foods like grass fed meat, liver, and fresh vegetables.  

Hope Sue feels better soon! 

 

[JohnSue]

On 1/31/2022 at 4:55 PM, trents said:

JohnSue, welcome to the forum! I am sorry to hear your wife is still suffering so after being diagnosed with celiac disease.

Studies show that most people who claim to be eating gluten-free really aren't. They are in fact eating a lower gluten diet than before. This is particularly true of those still eating out. Gluten can be found not only in food items but in meds and supplements since wheat starch can be used as filler in those things. Also, cosmetics can contain gluten so, particularly with those beauty products that come in contact with the lips and eyes (mucous membranes) need to be considered.

There is also the possibility that she has developed other food intolerances. Dairy is a common one but also eggs and soy. About 10% of celiacs react to oat protein the same way they do gluten. Studies have shown that for some people, the dairy protein casein causes villi blunting. Some medications like NSAIDs can cause villi blunting as well.

Concerning food allergy testing, you might look into the ALCAT testing method. Our forum administrator, Scott Adams, has an article on that somewhere on the forum. However, ALCAT often turns up a list of food intolerances longer than your arm and it can be discouraging. You have to eat something to stay alive so you would need to identify those foods for which the reaction is strongest and focus on those. The test does grade the strength of reaction to various food items.

Has your wife had any follow-up testing to see if the villi have recovered? That would be a good thing to look into so as to discriminate between gluten-caused symptoms and those that may be caused by other foods. It can take 1-2 years for the villi to fully heal after going on a strict gluten-free diet. Most cases of non healing villi are due to gluten still getting into the diet from unsuspected sources.

Hi. We have been very careful. We dont eat out. As for soap and shampoo. Use doves As for toothpaste use colgate. Have checked Villi, The surgeon and gasof villi.troenteroligist was quite happy with improvement. Its been 3 years so trusting things will improve.

Sue eats quite a lot of bananas, sweet potato wraps, pizza bases at home. also loves her yoghrt, woolworths - seems to be only thing that assists with weight

thanks for help

[JohnSue]

On 2/1/2022 at 1:27 PM, knitty kitty said:

Celiac Disease results in malnutrition because those flattened villi can't absorb nutrients, hence the weight loss.  Dairy products can cause inflammation and damage to the villi just as wheat, barley and rye.  

Testing for vitamin and mineral deficiencies are part of proper follow up care for Celiac patients.  

Talk with the doctor about supplementing with the eight B vitamins, Vitamins C and Vitamin D, iron, magnesium and omega 3 fats.  

When insufficient or deficient, several of the eight B vitamins (thiamine, B12, niacin) produce symptoms of neuropathy, brain fog, muscle weakness, and unsteadiness with changes in gait or a wider stance for balance.  

Taking a B Complex supplement could help.  B vitamins are water soluble and can be easily lost with diarrhea or vomiting.  Our bodies can't store B vitamins, so we need to take them every day.  

Try cutting out processed foods.  Eat nutritionally dense foods like grass fed meat, liver, and fresh vegetables.  

Hope Sue feels better soon! 

 

Sue just started using better you boost, daily vitamin B12 oral spray

Thanks for help

[1desperateladysaved]

I did Geneva food sensitive tests and it helped clear my fog.  I had been suffering symptoms for over 30 years.  Don't get discouraged.  I was sensitive to nearly everything and I just went to the store and got things that were new to me. For example I bought bison, duck, and venison for protein.  I found a list of veggies on Wikopedia and figured out that there are more kinds that I never heard of then kinds I heard of!  So jicama and sweet potato came into my life!  Berries were safe for me, so I had raspberries, strawberries and sour cherries.  There are so many more kinds of food; you don't have to worry about running out.

If you do the test you must try to find out what they will test and be sure to eat some within 2 weeks of the test.  This helps to assure that you will not have a false negative.

[knitty kitty]

On 2/3/2022 at 3:20 AM, JohnSue said:

Sue just started using better you boost, daily vitamin B12 oral spray

Thanks for help

B12 is just one of the group of eight B vitamins.  You need to get Sue a B Complex supplement that includes all eight B vitamins.  

Just taking one B vitamin can throw the others out of whack.  

Get a B Complex with all eight B vitamins.  Vitamin C and Vitamin D will help, too!

Hope Sue feels better! 

[trents]

If you live near a Costco, they have an excellent gluten free B-complex from their Nature Made line. You needn't worry about overdosing on B vitamins since they are water soluble. Your pee will turn yellow from the B2 (riboflavin). That is normal and harmless.