gluten-free diet, still have symptoms after 1.5 years.

[Riseland]

I have been gluten and dairy free for over 1.5 years and this has helped a lot of issues I was having that lead me to go gluten-free/DF in the first place. However over the past 6 months I  have been having a lot of symptoms (cramps, tummy pain, diarrhoea, nausea, eczema, anxiety etc) and visited the doctor who referred me to the Gastroenterology specialist for testing for Celiac disease and IBD. My tests showed that I have the celiac gene so I am now starting the gluten challenge for the next three weeks in preparation for the biopsy.

My tests for IBD came back negative so my question is, even if I am diagnosed Celiac, why am I still having symptoms on a gluten and dairy free diet? Has anyone else gone through this?

[kareng]

There are other reasons for those symptoms.  It is possible to have Celiac and something else.  Hopefully you are getting a colonoscopy, too?  To check for something more than Celiac.  It is also possible you are not as careful with your diet as you need to be? People with Celiac can't take a burger off a bun or eat food from a shared fryer. that type of thing.

[Ennis-TX]

5 hours ago, Riseland said:

I have been gluten and dairy free for over 1.5 years and this has helped a lot of issues I was having that lead me to go gluten-free/DF in the first place. However over the past 6 months I  have been having a lot of symptoms (cramps, tummy pain, diarrhoea, nausea, eczema, anxiety etc) and visited the doctor who referred me to the Gastroenterology specialist for testing for Celiac disease and IBD. My tests showed that I have the celiac gene so I am now starting the gluten challenge for the next three weeks in preparation for the biopsy.

My tests for IBD came back negative so my question is, even if I am diagnosed Celiac, why am I still having symptoms on a gluten and dairy free diet? Has anyone else gone through this?

Few thoughts

1. Medical Gluten Free for the celiac diet is VERY strict you have to clean out everything, check every ingredient, and have a dedicated gluten-free cook area and cook ware. Gluten residue, crumbs, etc can trigger the antibodies. Is your house dedicated gluten-free? Or is it a shared house? Do you eat out?

2. With a gluten-free diet you have to eat different whole foods every meal keeping it balanced with to get all the nutrients you need. Unlike processed gluten foods which are basically sprayed with multivitamins and enriched. gluten-free foods, whole foods, etc. Lack such enrichment and require you to eat a varied meal of different foods to get the vitamins and nutrients you need and or additionally supplement. Most celiacs have nutrient absorption issues in addition and have to supplement a few common nutrients. Deficiency in such nutrients can cause most of the symptoms you mentioned. IT sorta stacks with celiac and can make this disease a bit hard to get used to at first.

3. It is common for other issues to develop along side celiac, SIBO, Ulceartive Colitis, Histamine issues, Food intolerance, food allergies, hashimoto, and all kinds of other issues sometimes turn up with it. The scopes will help narrow down if you have any other issues along with the blood test.

For now my suggestion is to first off start keeping a food diary, record all ingredients used in your meals, all spices, and what you drink. record how you feel a few hours later and throughout the day. Change up your meals rotating cuisines and foods, record the effects. You might notice a pattern, of some foods cause the issues these might be intolerance issues. Some other foods you might find give you more energy and make you feel great, and these could point at deficiency and stuff you might need. After a while you can build your new diet around these.

Supplementation, anxiety, cramps, I might suggest Doctors Best Magnesium, along with Liquid Health Stress & Energy along with Liquid Health Neurological Support, I might also suggest getting your iron and vitamin D checked. The Doctors best should be easy on the stomach with high bioavailabity compared to others and with your D issues I would suggest this form over others. The Liquid health is a nice blend of B-vitamins, folic acid, and other nutrients commonly needed with this disease. I dose at about 1tbsp each of the liquid health products 3 times a day before a meal.

I wish you the best of luck with the testing and the gluten challenge, remember you have 2 options here, 1 you can enjoy gluten and binge out or if it is too painful remember you only need 1/2 a slice of bread a day to keep the antibodies up, So many choose to just have that before bed and trying to sleep off the effects, more pure versions include a few tsp of wheat germ or a handful of wheat thins.

A helpful chart https://www.ahealthblog.com/wp-content/uploads/Vitamin-Deficiency-Symptoms-Chart.webp

[Riseland]

On 8/9/2017 at 11:21 PM, kareng said:

There are other reasons for those symptoms.  It is possible to have Celiac and something else.  Hopefully you are getting a colonoscopy, too?  To check for something more than Celiac.  It is also possible you are not as careful with your diet as you need to be? People with Celiac can't take a burger off a bun or eat food from a shared fryer. that type of thing.

Thanks for your comment Kareng. They aren't doing a colonoscopy as my blood and stool tests were negative. We have a gluten and dairy free house and are 100% gluten-free/df when eating out. There is always possibility of contamination at cafes/restaurants however.

[Riseland]

On 8/10/2017 at 0:10 AM, Ennis_TX said:

Few thoughts

1. Medical Gluten Free for the celiac diet is VERY strict you have to clean out everything, check every ingredient, and have a dedicated gluten-free cook area and cook ware. Gluten residue, crumbs, etc can trigger the antibodies. Is your house dedicated gluten-free? Or is it a shared house? Do you eat out?

2. With a gluten-free diet you have to eat different whole foods every meal keeping it balanced with to get all the nutrients you need. Unlike processed gluten foods which are basically sprayed with multivitamins and enriched. gluten-free foods, whole foods, etc. Lack such enrichment and require you to eat a varied meal of different foods to get the vitamins and nutrients you need and or additionally supplement. Most celiacs have nutrient absorption issues in addition and have to supplement a few common nutrients. Deficiency in such nutrients can cause most of the symptoms you mentioned. IT sorta stacks with celiac and can make this disease a bit hard to get used to at first.

3. It is common for other issues to develop along side celiac, SIBO, Ulceartive Colitis, Histamine issues, Food intolerance, food allergies, hashimoto, and all kinds of other issues sometimes turn up with it. The scopes will help narrow down if you have any other issues along with the blood test.

For now my suggestion is to first off start keeping a food diary, record all ingredients used in your meals, all spices, and what you drink. record how you feel a few hours later and throughout the day. Change up your meals rotating cuisines and foods, record the effects. You might notice a pattern, of some foods cause the issues these might be intolerance issues. Some other foods you might find give you more energy and make you feel great, and these could point at deficiency and stuff you might need. After a while you can build your new diet around these.

Supplementation, anxiety, cramps, I might suggest Doctors Best Magnesium, along with Liquid Health Stress & Energy along with Liquid Health Neurological Support, I might also suggest getting your iron and vitamin D checked. The Doctors best should be easy on the stomach with high bioavailabity compared to others and with your D issues I would suggest this form over others. The Liquid health is a nice blend of B-vitamins, folic acid, and other nutrients commonly needed with this disease. I dose at about 1tbsp each of the liquid health products 3 times a day before a meal.

I wish you the best of luck with the testing and the gluten challenge, remember you have 2 options here, 1 you can enjoy gluten and binge out or if it is too painful remember you only need 1/2 a slice of bread a day to keep the antibodies up, So many choose to just have that before bed and trying to sleep off the effects, more pure versions include a few tsp of wheat germ or a handful of wheat thins.

A helpful chart https://www.ahealthblog.com/wp-content/uploads/Vitamin-Deficiency-Symptoms-Chart.webp

Hi Ennis, Thank you for this information.

We have a completely gluten-free/DF house, the only contamination would come from eating out although we are pretty strict. 

We have a very balanced diet and attempt to take supplements to help with anything that is lacking - hard to know what to take so thank you for your recommendations. I have previously found that magnesium gives me cramps and diarrhoea  I've had my iron and B12 checked recently and it's been fine.

I'm currently keeping a diary while doing the gluten challenge and will continue after I've had the biopsy. 

One symptom I currently have from the gluten challenge is a lump in my throat, if anyone has any tips for getting rid of it, that would be wonderful!

 

[frieze]

what changed just prior to the onset of symptoms?  remember, you have to read all labels all the time.

companies can change ingredients at any time with out notification of any kind.   good luck