Confused...

[SJW]

Not sure what to think... or do, looking for anyone with an experience like mine. 

Blood work came back with TTG IGA at 33 & TTG IGG AT 22. At that point they wanted to do the endoscopy and I was/am still consuming gluten BUT the endoscopy came back negative for Celiac. Both my primary and GI doctors are quick to say IBS, personally I think IBS is an easy go to blanket diagnosis for when they have nothing else to go on. I have terrible stomach pain / pressure pretty much all the time (upper abdomen and radiates to the right, AWFUL bloating, I burp & have gas constantly, I wake up tired, I'm just always tired and then of course there's the "foggy brain". 

So what i'm interested in finding out is if anyone has had experiences like mine and what did you do? Did you just go off gluten and if so did it help??

Thank You All In Advance!!!!

[tessa25]

In your position, if celiac testing was done then I would go celiac strict gluten free for a few months and check the blood test numbers again to see if start going down.

[SJW]

That is what I was thinking, but wanted to make sure with people who had actual similar experience(s) first. It's super frustrating not having a concrete answer and trying to figure it out and then to have doctor's making you feel like your crazy for trying to figure it out... Thank You Very Much For Responding!!!!

[Ennis-TX]

I do not know the reference range for your blood test but I assume positive? The intestine has the surface area of a tennis court. SO I imagine you just have patchy damage and they missed it.
Go ahead and go gluten free, keep a food diary, and read the newbie 101 thread about how to clean out your kitchen what to replace. Also remove dairy and oats, dairy is commonly a issue with causing gastric issues with us as damaged villi mean we do not utilize the enzymes to break down lactose. Oats are commonly contaminated and some of us react to them regardless.

To help with the bloating and gas, go easier on the carbs, more meat and veggies and perhaps sweet potatoes. Try Stews, Soups, Sheet pan meals with whole foods. Crock pot liners make it easy to clean up a safe cooking and allow you to make batch meals, really look up gluten free crockpot meals with whole foods.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

B-vitamins like Liquid Health Stress & Energy and Neurological Support can help with the fog in addition to magnesium like Doctors Best since you do not mention any C issues would be easiest on the gut.

 

[SJW]

Wow... that's way more information then any doctors has been able to give me!! I'm so glad I found this forum and am grateful for the responses!! And Google was confusing... THANK YOU!! The TTG IGA & TTG IGG are both high / out of range on the Celiac panel. I'm vitamin D deficient also and I will be taking your advise and purchasing the products you suggested!! Was C issues meaning constipation?  

[Ennis-TX]

6 minutes ago, SJW said:

Wow... that's way more information then any doctors has been able to give me!! I'm so glad I found this forum and am grateful for the responses!! And Google was confusing... THANK YOU!! The TTG IGA & TTG IGG are both high / out of range on the Celiac panel. I'm vitamin D deficient also and I will be taking your advise and purchasing the products you suggested!! Was C issues meaning constipation?  

Yes constipation is something some of us get do to magnesium deficiency, if you had this I would have suggest a different brand (Natural Vitality Calm) it requires special dosing for us and can be a bit harsh on the gut and you have to ease into it.

Yeah I also have list of gluten free alternatives that will be updated soon, but whole foods should be your focus starting off til you learn about reading labels and get some healing.

[SJW]

That C comes and goes but for the most part not an issue, D would be more of the way I am. The newest thing is for the past few months I get numbness in my feet, I've read Celiac can do that too.... How long have you been gluten free if you don't mind me asking? 

[RMJ]

Luckily a doctor’s prescription is NOT needed to go gluten free!  I’d do what Tessa25 suggested.  Go strictly gluten free for 6 months, see if you feel better, and have your antibodies retested.

[Ennis-TX]

5 minutes ago, SJW said:

That C comes and goes but for the most part not an issue, D would be more of the way I am. The newest thing is for the past few months I get numbness in my feet, I've read Celiac can do that too.... How long have you been gluten free if you don't mind me asking? 

About 5 years now? Had the disease much longer....just diagnosed when I thought I was dying lol.

Numbness can be from various B vitamins, Magnesium, or if like me it can be peripheral neuropathy caused by gluten ataxia. Basically your immune system also attacking your nervous system and brain.....Mine caused a few complications partially due to this. And messed up some other things like what we suspect led to the Ulcerative Colitis, and my random food allergies/Intolerance issues.

I thought I was dying back then so I went overkill, all new appliances, cookware and a 100% gluten free home. Loved cooking so I enjoyed making gluten free foods to meet my dietary restrictions, I also started a small gluten free bakery and doing chef jobs for people to make ends meet with the new diet.

Also forgive me about something bit of a heads up, I have Asperger Syndrome so I am like Sheldon from big bang theory. I like to warn people when I start talking often with them, quirks will be noticed.
 

[SJW]

No worries at all & no need to mention it, my niece has Asperger Syndrome and she's just perfect to me!!  I also love to cook, this will certainty be a change not only for me but also for whom I cook for...  

[Wheatwacked]

1 hour ago, SJW said:

Did you just go off gluten and if so did it help??

Yes. 

[Wheatwacked]

Of course you will continue to find other foods and nutritional deficiencies and side effects of the medications you take. Read Dr. Davis' book, Wheatbelly Total Health for a good overview. Most of the current popular diets today all have one common thread, either complete or severely reduced consumption of wheat containing foods then add nutrition focused on their particular specialty. Dr. Davis is a cardiologist.

[Wheatwacked]

Until one day in the not far future you wake up one morning and feel good for the first time in a long time. Thanksgiving 2014 I, like Ennis, was convinced I was going to die, and medications I was prescribed were not helping.  Now I am on my way to health. Try 1000 mg Pantothenic Acid (B5) sustained release capsules and 500 mg Magnesium oxide caps for your numbness. It is helping me. Vitamin D was helpful at the lower doses but it was when I started taking 10,000 iu a day that it really made a difference in my life. For the vitamins to effect me I needed the to raise my level to the middle of the recommended range, and that just will not happen by supplementing with 20% of your daily minimum. When we eat the essential vitamins and minerals our bodies use what is needed and stores the rest for days when it is not available. Vitamin D is only made from sunshine and organ meats. The rest of the time it takes it from storage in the skin, so you need an ample supple for the other 75% of the year.