10 Years gluten free and getting worse?

[mvh9]

Hi everyone. I apologize up front for the long post but I am at the point where I pretty desperate and need help.

So about 10 years ago (when I was 12) I was diagnosed with Celiac Disease and ever since I have been following a very strict gluten free diet. I live alone and have no chance at cross contamination at home and hardly eat out so I am pretty confident I am as gluten free as possible. When I started eating gluten free my stomach pain went away after about 1.5 years and I thought I had the miracle cure. However, as I got older I started to develop this laundry list of symptoms that go along with general autoimmune diseases such as:

migraines and mood swings

 constant sores in my mouth

 joint/back pain

absolutely extreme bloating

and chronic sinus infections that have caused me to have surgery

Of course this isn't a full list but I didn't know if it would help to list more of them

 When I got into college the issues I was having were really interfering with my life and my mood and I kept going to the doctor and not really being told much because I was following this gluten free diet. I started doing different elimination diets, working out more, and different things to no avail. 

 

In the last couple of months I have really cracked down and said I am going to take charge of my health and do what I need to to feel better. So I have started a regime of probiotics, more water (close to a gallon a day), a mostly plant based and lean meat diet, digestive enzymes, vitamins, and regular exercise. This went wonderfully for about 3 weeks, plateaued for a few weeks, and now all of the sudden I am having more abdominal pain after eating than ever that is new and different that anything I have felt and most of my "laundry list" of symptoms mentioned above have come back with some getting worse such as skin rashes and hives when exposed to heat and bloating so bad and painful that, for my size, people ask me if I am pregnant.

 

At this point I am so defeated and sad I don't know what to do. I am a by the book celiac disease patient and am willing to do whatever I need to so I can feel better but I just don't know what that is. With the new stomach pain that seems to be triggered by random foods that have never given me any trouble I am getting scared to eat anything, even simple fruits and vegetables. I can't wear normal clothes because of the extreme painful bloating and I feel like my life is being taken over by these issues. At this point I am wondering a few key things:

Is all of this not celiac disease related and is something else entirely?

Can you have issues from an autoimmune disease such as Celiac even though you are strict on the diet? (i.e can your body still be hurting just because your immune system isn't in full health? Is this even a thing?)

Do I have other food sensitivities that could be impacting me?

 

Side note: I am completely dairy free and avoid large amounts of soy like tofu and soybeans and also try to stay away from highly processed foods. When I eat large amounts of sugar like pancake syrup or minute maid lemonade I get a really horrible reaction with dry mouth and fatigue that requires me to nap immediately. I have been trying to keep my eating low glycemic as recommended by a doctor and that has helped even out my energy throughout the day to an extent. 

Thank you so much in advance for your help! 

[cyclinglady]

52 minutes ago, mvh9 said:

Hi everyone. I apologize up front for the long post but I am at the point where I pretty desperate and need help.

So about 10 years ago (when I was 12) I was diagnosed with Celiac Disease and ever since I have been following a very strict gluten free diet. I live alone and have no chance at cross contamination at home and hardly eat out so I am pretty confident I am as gluten free as possible. When I started eating gluten free my stomach pain went away after about 1.5 years and I thought I had the miracle cure. However, as I got older I started to develop this laundry list of symptoms that go along with general autoimmune diseases such as:

migraines and mood swings

 constant sores in my mouth

 joint/back pain

absolutely extreme bloating

and chronic sinus infections that have caused me to have surgery

Of course this isn't a full list but I didn't know if it would help to list more of them

 When I got into college the issues I was having were really interfering with my life and my mood and I kept going to the doctor and not really being told much because I was following this gluten free diet. I started doing different elimination diets, working out more, and different things to no avail. 

 

In the last couple of months I have really cracked down and said I am going to take charge of my health and do what I need to to feel better. So I have started a regime of probiotics, more water (close to a gallon a day), a mostly plant based and lean meat diet, digestive enzymes, vitamins, and regular exercise. This went wonderfully for about 3 weeks, plateaued for a few weeks, and now all of the sudden I am having more abdominal pain after eating than ever that is new and different that anything I have felt and most of my "laundry list" of symptoms mentioned above have come back with some getting worse such as skin rashes and hives when exposed to heat and bloating so bad and painful that, for my size, people ask me if I am pregnant.

 

At this point I am so defeated and sad I don't know what to do. I am a by the book celiac disease patient and am willing to do whatever I need to so I can feel better but I just don't know what that is. With the new stomach pain that seems to be triggered by random foods that have never given me any trouble I am getting scared to eat anything, even simple fruits and vegetables. I can't wear normal clothes because of the extreme painful bloating and I feel like my life is being taken over by these issues. At this point I am wondering a few key things:

Is all of this not celiac disease related and is something else entirely?

Can you have issues from an autoimmune disease such as Celiac even though you are strict on the diet? (i.e can your body still be hurting just because your immune system isn't in full health? Is this even a thing?)

Do I have other food sensitivities that could be impacting me?

 

Side note: I am completely dairy free and avoid large amounts of soy like tofu and soybeans and also try to stay away from highly processed foods. When I eat large amounts of sugar like pancake syrup or minute maid lemonade I get a really horrible reaction with dry mouth and fatigue that requires me to nap immediately. I have been trying to keep my eating low glycemic as recommended by a doctor and that has helped even out my energy throughout the day to an extent. 

Thank you so much in advance for your help! 

I am sorry that you are ill.  When was the last time you had follow-up testing done for celiac disease (antibodies and/or endoscopy)?

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Rule out active celiac disease as the culprit of your current symptoms first otherwise you are just guessing.  

[tessa25]

In your position I would have the full celiac panel done to verify that there isn't hidden gluten sneaking in somewhere.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You could be sensitive to less than 20ppm gluten so a gluten free label on a product could have no meaning for you.

If the test results do show a high you could buy a Nima sensor to check all of your food to find the culprit.

If the test results were negative I would go to a gastroenterologist for a diagnosis.

Good luck.

[mvh9]

Thank you both for the response. I actually didn't get a follow up appointment until the first time last year. I did blood work and they said I was all clear for cross contamination.

I am going to schedule an appointment with my GI doctor soon and review my lab work in detail since I was just given results over the phone and will also start trying to do some digging into what exactly is going on. 

[cyclinglady]

42 minutes ago, mvh9 said:

Thank you both for the response. I actually didn't get a follow up appointment until the first time last year. I did blood work and they said I was all clear for cross contamination.

I am going to schedule an appointment with my GI doctor soon and review my lab work in detail since I was just given results over the phone and will also start trying to do some digging into what exactly is going on. 

I am glad you are going to the doctor!  Something is definitely wrong!  

[icelandgirl]

Hi Mvh9!

I'm so sorry that you are suffering like this!  ((((Hugs))))

Definitely get that GI appointment scheduled sooner rather than later.  Ask for a repeat celiac panel.  You should get one yearly.  My GI doc does that along with CBC, Metabolic Panel, Iron and Ferritin and Vitamin D and B12 yearly.  It would be a good idea for you to have all of those.

There could certainly be something else going on as well and it could be autoimmune.  It does seem like many people with autoimmune diseases have more than 1.

Have you had a full thyroid workup?  Not just TSH.  It would include:

TSH

Free T3

Free T4

TPO Ab

TGAb

A lot of celiacs seem to also have thyroid issues.  I have Hashimotos.  When my thyroid is out of whack I get bad headaches, joint pain, severe fatigue.  The thyroid is involved in every process that your body does so having it in a good place is really important.

I hope that you get some answers soon and start to feel better!