Gluten Intolerance Help?

[BME21]

Hi All! 

A little lengthy story here, so I will cut it short. 

Last year I started getting symptoms resembling celiac disease. I did the gluten challenge and my tests came back "negative." However, I don't think I was told the right amount of gluten to be eating for this challenge. I had an upper endoscopy done that showed "negative" as well. 

I started eating gluten again for a couple of months & then went to a holistic doctor since my GI sent me out the door with a low fodmap food paper haha even though I felt like something was really wrong with me. 

Symptoms:

unintentional weight loss

fatigue

joint pain/inflammation in body

Dry skin/scalp

Stomach/bladder just feeling inflamed/irritated 

rash on upper stomach 

loose stools 

neuropathy type feeling in my legs and feet (tingling)

I went to this holistic doctor who did a GI map test on me and an intestinal permeability test which showed I had a high wheat sensitivity and intestinal permeability was pretty bad. 

I then started doing a gluten free diet, however, I started to reacting to even most gluten free foods. (Tapioca starch, etc.)

My food list is pretty limited and healthy today. I am trying to heal my gut & gut lining to see if I can get any weight back. 

Does this sound like anything that anyone on this forum has experienced? It has been a pretty bad year for me. I am taking a bunch of supplements and also taking L Glutamine to help try and heal my gut. Although, I know this can take some time? Any feedback is appreciated.  Thank you! 

[Wheatwacked]

 

Supplements: B12;B complex;B5 1000 mg;Phosphotidyl Choline 840 mg;Lithium 5 mg;Dhea 100 mg;vitamin C 1000 mg;Calcium 1000 mg;vitamin D3 250 mcg (10,000 IU); 7.5mg Nori (for iodine); 20 ml Cod Liver Oil (vitamin A and omega 3); 2 ounces of almonds (for vitamin E); 10 mg fresh parsley (vitamin K). Goal of 4700mg potassium a day from food. I chose them after tracking my nutrient intake every day for almost two years. While healing you need more than just the minimum recommended vitamins and minerals. Beans are an excellant source for potassium, folate and phosphorus.

My diet: http://nutrientlog.doodlesnotes.net/

My list is like yours but I had 18 different symptoms that cleared up with GFD  including lifelong mouth breathing, sleep apnea and prostate hypertrophy. My prostate was diagnosed in 1971 and is no longer a problem.

[Scott Adams]

Welcome to the forum @BME21! 

It does sound possible that you were not eating enough gluten before your celiac disease screening for it to allow for a positive test, but it's not clear how much gluten you were eating before the tests, and for how long. Normally you would eat 2 slices of wheat bread for 6-8 weeks before a blood screening, and for 2 weeks before an endoscopy.

Also, there is a condition called non-celiac gluten sensitivity (NCGS) which around 10x more people have than have celiac disease, but unfortunately there isn't yet a test for this, however if you have this you still need to be on a gluten-free diet.

To me it sounds like you likely are in the NCGS category, and to get a diagnosis of celiac disease you might need to do a gluten challenge and get re-tested:

 

[BME21]

1 hour ago, Scott Adams said:

Welcome to the forum @BME21! 

It does sound possible that you were not eating enough gluten before your celiac disease screening for it to allow for a positive test, but it's not clear how much gluten you were eating before the tests, and for how long. Normally you would eat 2 slices of wheat bread for 6-8 weeks before a blood screening, and for 2 weeks before an endoscopy.

Also, there is a condition called non-celiac gluten sensitivity (NCGS) which around 10x more people have than have celiac disease, but unfortunately there isn't yet a test for this, however if you have this you still need to be on a gluten-free diet.

To me it sounds like you likely are in the NCGS category, and to get a diagnosis of celiac disease you might need to do a gluten challenge and get re-tested:

 

Hey - Thank you so much for your response! That was all so helpful. I don't feel like I was eating the correct amount for the length of time at all then. 

I also feel like I might be one of those that fall into that NCGS category. I will have to look at either doing the gluten challenge again and retesting or just staying away from gluten moving forward. 

I appreciate your help.