I really need some advice from some experienced celiacs

[Maddiecl]

I am coming up on my one year anniversary of being diagnosed with celiac and being gluten free. I am still not feeling back to my old self, although I have seen several improvements in my health since I have been gluten free, I am still nowhere near where I want to be.  I still get nauseated very easily, I still get GERD, aches and pains and anxiety, and I still get fatigued (although I was just diagnosed with graves so that could be to blame). 

I have been tested multiple times for deficiencies, allergies, and food sensitivities.  I have tried doing an elimination diet, and keeping a food journal several times with no luck as to what could be triggering my symptoms. I don't eat out of my own home, I have a 100% gluten free kitchen.  I do not buy anything unless it is labeled gluten-free or naturally gluten-free.  I don't drink coffee, alcohol, I don't smoke, I do yoga, I mean I am doing everything I can possibly think of to help myself feel more healthy and it just hasn't happened. 

Can it really take this long to feel all of the way better?  Do you think I should be pushing my doctor to test me for more things? If so, what? Or do you think I need to be more patient? (I'm 25 and was only sick about 2-3 years before diagnosis)

Thanks!

 

[cyclinglady]

If I recall, you had several issues going on.  At six months, a repeat endoscopy/biopsies revealed some villi healing.  Closing in on your one year anniversary, chances are you have had more healing.  You also had some kind of gastritis that your doctor told you not to worry about.  Was it autoimmune?  If so, there is not much you can do to manage it without trying autoimmune treatments like biologics or steroids to suppress your immune system.  Of course, you need to talk to your doctor!  And finally you have Graves.  That can really wipe you out.  

What to do?  Consider the AIP (Autoimmune Protocol) diet.  While gluten-free takes care of your celiac disease, the AIP diet might allow you calm down your gastritis and Graves.  There was a small study (Scripps, San Diego)  done with IBD patients and they experienced over a 70% remission.  They are crowd funding in hopes of funding a new study with Hashimoto’s patients.  

 What is your doctor doing for your Graves diagnosis?   Be careful because it can damage your eyesight!    My mom has Graves.  She has permanent double vision.  

I have Chronic Autoimmune Gastritis.  My small intestine has completely healed.  I am considering the AIP diet.  So, I understand your frustration.  

 

[RMJ]

You said you only buy things labeled gluten free.  Perhaps you are sensitive to very low levels of gluten?  I pretty much stick to things that are labeled as certified gluten free.  Or you could eliminate processed foods entirely and try the Fasano diet.

[Posterboy]

On 9/13/2018 at 10:05 PM, Maddiecl said:

I still get nauseated very easily, I still get GERD, aches and pains and anxiety, and I still get fatigued (although I was just diagnosed with graves so that could be to blame). 

Maddiecl,

Doctor's go to where the inflammation is occurring?

Which sounds like a good thing but we want to be ahead of the curve and not behind it right?

If your stomach is inflamed then that same inflammation trigger will continue to effect the rest of your GI tract including your small intestine which comes next down the line in a manner of speaking.

Digestion is a north south process.  Treat your Stomach and inflammation down stream can clear up too I believe.  Once you understand that it all begins to make a lot more sense.

https://bodywisdomnutrition.com/digestion-a-north-to-south-process/

I have an agricultural background so I think in terms of nature often.

when we try to stop a ditch .... throwing things in the bottom of it only leads to a wash out think the badlands of South Dakota.

But treat the process (ditch) from the head ward erosion end by throwing in rip/rap large stones to hold back and slow the water and the are behind the beach head (so to speak) fills in behind it and the ditch is stopped from the top down.

Same too by treating your bloating, GERD and nausea

On 9/13/2018 at 10:05 PM, Maddiecl said:

I am still nowhere near where I want to be.  I still get nauseated very easily, I still get GERD, aches and pains and anxiety

etc. and etc.

Look up gastropesis.

Here is an article about it

https://www.healthline.com/health/gastroparesis

90% of the time ones stomach acid is not strong enough to make a good defense for the small intestine and it too get's inflammmed by proteins the body can no longer digest.

see this older research that laments that doctor's are forgetting (have forgot) today that the stomach comes before the small intestine and it's inflammation is linked to other inflammation in the body because the "ditch washes" out and keeps getting bigger and bigger until we are swallowed up in sickness too often.

See this research that links gut health to thyroid health entitled "Atrophic Body Gastritis in Patients With Autoimmune Thyroid Disease An Underdiagnosed Association"

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1105623

And this was a few  year ago now.  Today they don't link the too often.

We  have become disconnected from the "GI System" today and forget that the system should/does work in tandem as noted in the above research.

Once one part becomes atrophic (wastes away) other body parts also begin to malfunction.

Our connection is through nutrients to keep us healthy, control inflammation.

Vitamins are needed in minimum amounts are we become sick.

Taking Magnesium Citrate can help your energy and fatigue not related to anemia.

Taking Vitamin D and Selenium can help your thyroid.

Here is the research on the Vitamin D thyroid connection entitled "Vitamin D supplementation reduces thyroid peroxidase antibody levels in patients with autoimmune thyroid disease: An open-labeled randomized controlled trial."

https://www.ncbi.nlm.nih.gov/pubmed/27186560

without a strong stomach acid (big boulders) at the head of the ditch to collect our nutrients they are washed on out of the system before we have a chance to absorb them.. . . and why diarrhea in part is considered a killer. 

if it goes on unchecked and a hospital in the middle of the woods when you are hiking and you become dehydrated etc.  And why you shouldn't drink the water from a stream (No matter how clear) when hiking.

We can't balance our electrolytes and our kidneys will shut down when it is too severe. 

But that rarely happens from food alone unless we have developed a stomach bug that also causes us to "vomit it" back up too.

I have rambled on too long again as usual.

Once the gastroparesis get's very severe other diseases develop as complicatons of not being able to absorb your nutrients anymore....... It is called amyloidosis.

Here is a nice article about it.

https://www.healthline.com/health/amyloidosis#symptoms

But I don't think you have that yet. . .. but you do seem to have the symptom's of gastroparesis.

Linked here again for easy reference.

https://www.healthline.com/health/gastroparesis

If the doctor's are working on the wrong end of the GI system (ditch in our analogy) you can test this by taking some BetaineHCL 3 or 4 capsules with a glass of water and a meal.

if it improves digestion. . . you are ahead of the curve/at the head of the ditch.

Bloating, heartburn (GERD) and your nausea will improve.

see this link/thread that talks about some of the same issues in more detail.

https://www.celiac.com/forums/topic/122303-extreme-bloat-help/

I only know it helped me..... I hope it helps you as well like it did brandi1969.

I must stop for  now but I hope this is helpful.

good luck on your continued journey.

***** Again this is not medical advice but I hope it is helpful.

As always “Consider what I say; and the Lord give thee understanding in all things”

2 Timothy 2:7 this included.

Posterboy by the grace of God,

 

[RyanPercival]

Thanks for the help posterboy. It seems to be really helpful.

[selectivefocus]

Read this:

https://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/

[Toni B]

I do remember that feeling and my frustration with doctors.  Thyroid disease will definitely make you feel tired.  In my own experience I can tell you that I had to give up dairy and coffee for a while.  Only then did my stomach heal.  Also, kefir was helpful in.the healing process, and when my stomach gets bad again, I always return to these three things.  Good luck.  Also, my Drs didn't help me as much as with my continuing stomach issues as a.good nutritionist did.  She was a Godsend.