Newb...Feeling Silly, But Better

[BlackShoesBlackSocks]

Hey all

 

This looks like a pretty active forum and l've wound up here after googling several things since around the beginning of the year.

 

January 2017 l went from my normal, low weight of 105 to 97 lbs discovered at a check up and became very scared, l felt thinner but had no idea l was under 100 lbs, which hadnt happened since at least before puberty for  me. l am 33.

 

After discontinuing Topamax for migraine which surely could have contributed and trying everything possible to put the weight back on l started researching why it wasn't happening after several months. l had some bloodwork that showed very low D and potassium, no real clues at the time.

 

Earlier this month after putting small pieces together l asked a GI for a celiac panel. Stomach pains that felt like something was trying to push 'out' of my stomach were the final push for me, as well as what the doc suggested was probably a hemorrhoid (some late night episodes of very painful constipation).

 

l had never considered Celiac or even gluten sensitivity until around March this year, no family diagnosis of it. Some of the reasons l believed it could be the case include a family history of chronic pain conditions, severe mental health disorders (mostly psychotic), and a grandmother with Parkinson's (all on father's side). The degenerative aspect of some of these disorders reminded me of what l'd read about undiagnosed Celiac disease or gluten intolerance throughout life and in older generations.

 

l have been gluten free for under 2 weeks, although l did try it for about 5 days a few months ago. The doctor refused a celiac test at the time, but did imply that he would do it 'at some point' if what he was suggesting first didn't work (basically prescription Metamucil called Peg3...something :P) l had scheduled the appointment in June and did not want to wait any longer for an answer. l don't think he disbelieved me but maybe my case didn't seem dramatic enough, which, personally l don't think a person should have to present a dramatic story and very severe symptoms just for the blood panel. Any experiences similar to this?

 

 

Lol, apologies for the book and life story. l'm not sure if l'll be much of a regular here, l want to pop in and out for suggestions on making this easier and maintaining it. It hasn't been too bad so far and l do feel MUCH less exhausted upon waking, morning daily headache is gone, puffiness in the hands and even the Raynaud's l was getting even  in warm weather seems to be calming down and my hands look red and alive.

 

Allergies which l could never attribute to anything specific seem to be leveling although l have had one day with a severe attack, likely a mold allergy related to rain which may not be at all gluten related. l did take a home test by a company called nanorepro ordered online, vaguely positive. l'd like to someday ask for a test again but am not sure how to approach it, and am definitely not looking forward to eating a regular diet again for 6 weeks so l would really like to stay on the gluten-free diet for several months at least before considering it.

 

l'd love to hear advice or similar stories.

[tessa25]

In America you can order your own blood tests at online places like directlabs.com or walkinlab.com. They do the same tests the doctors order. They are not covered by insurance. You can give the results to a gastroenterologist if there is a positive. I'm only suggesting this because your doctor "wouldn't allow"  it.

 

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

I use walkinlab.com (I'm not affiliated with them in any way).  At walkinlab.com it's called the celiac comprehensive antibody test and costs $298.00 (not covered by insurance). The blood draw is done at your nearest Labcorp. You get your results in less than a week . You can see a sample report on their website.
 

You have to have been eating gluten for the past 12 weeks for valid results.

[Ennis-TX]

As mentioned you have to be eating the gluten for the test to work.

Thoughts, constipation has stacked factors in celiac disease, one being a magnesium deficiency, I would suggest using Natural Vitality Calm in your case as it can have a laxative effect. You want to ease into it starting at 1/4 tsp twice daily and slowly up it to the full dose or above til your BMs are more normal and easy.  PS the Metamucil stuff is BAD for long term, use it for week only at a time, then take a month or so break. my dietician describes it like scrubbing your intestines with a loofah sponge, It can cause irritation and damage with long term use especially if you already have damage being caused by other factors.

You did not mention any of your other issues present but if you have B-vitamin or niacin deficiency I have some suggestions there.  Oh on potassium, I use 3 things for mine. I eat a ton of spinach, coconut, and almonds all high in dietary fiber and potassium along with Nutritional yeast in sauces, seasonings, etc as it has a nice blend of vitamins and minerals use KAL version for this as it is safe. There is also a salt replacement that uses potassium instead of sodium. BE careful here as your will REALLY have to up your liquid intake with these. Your body tends to clear out liquids urinating with upped potassium. The magnesium also helps keep water in your stool.  

Bulking up.....I hear your I am slowly doing it on a ketogenic diet, I found a whole bunch of healthy fats, and high protein works great for this, Look for good complete proteins from vegan non dairy sources. You HAVE to stick to safe brands with these. I would suggest pumpkin seed protein from Oregon Seed Oil Co on amazon, really high in zinc and complete amino acid complex with healthy fats and even vitamin K. And Jarrow Hemp is another good one along with MRM Sacha Inichi powder(taste like peanut butter). I also use 3 blends in shakes on rotation MRM Veggie Elite, Nutra Key V-Pro, and Jarrow Plant blends. I found some breads, from Julian Bakery that are nut based chock full of potassium healthy fats, and gluten free that are GREAT toasted. I have posted recipes for flat breads, garlic breads, cheddar biscuits in the recipes section that might be of some help in getting fats and protein in.....I know there are some other things I am forgetting.

[BlackShoesBlackSocks]

42 minutes ago, tessa25 said:

In America you can order your own blood tests at online places like directlabs.com or walkinlab.com. They do the same tests the doctors order. They are not covered by insurance. You can give the results to a gastroenterologist if there is a positive. I'm only suggesting this because your doctor "wouldn't allow"  it.

 

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

I use walkinlab.com (I'm not affiliated with them in any way).  At walkinlab.com it's called the celiac comprehensive antibody test and costs $298.00 (not covered by insurance). The blood draw is done at your nearest Labcorp. You get your results in less than a week . You can see a sample report on their website.
 

You have to have been eating gluten for the past 12 weeks for valid results.

Thanks, l have seen these but am not able to afford most at this time. l did take a test called GlutenCheck, l should have clarified, not a mold allergy test, just a guess at that by allergies ALWAYS rain related.

 

The test was a 2 line format, one  red control line and one red line if you are positive. l had some pink in the positive area and the company said that is a vague positive. Not a straight, red positive line.

 

I think it was TTG IGA only. l'm not sure if the GI l went to would be interested in seeing it, it has decomposed a bit over time but l definitely will mention it.

 

l would be interested in ordering the labs in the future and getting those results to a doctor since they are more thorough and won't degrade like the rapid panel.

[BlackShoesBlackSocks]

45 minutes ago, Ennis_TX said:

As mentioned you have to be eating the gluten for the test to work.

Thoughts, constipation has stacked factors in celiac disease, one being a magnesium deficiency, I would suggest using Natural Vitality Calm in your case as it can have a laxative effect. You want to ease into it starting at 1/4 tsp twice daily and slowly up it to the full dose or above til your BMs are more normal and easy.  PS the Metamucil stuff is BAD for long term, use it for week only at a time, then take a month or so break. my dietician describes it like scrubbing your intestines with a loofah sponge, It can cause irritation and damage with long term use especially if you already have damage being caused by other factors.

You did not mention any of your other issues present but if you have B-vitamin or niacin deficiency I have some suggestions there.  Oh on potassium, I use 3 things for mine. I eat a ton of spinach, coconut, and almonds all high in dietary fiber and potassium along with Nutritional yeast in sauces, seasonings, etc as it has a nice blend of vitamins and minerals use KAL version for this as it is safe. There is also a salt replacement that uses potassium instead of sodium. BE careful here as your will REALLY have to up your liquid intake with these. Your body tends to clear out liquids urinating with upped potassium. The magnesium also helps keep water in your stool.  

Bulking up.....I hear your I am slowly doing it on a ketogenic diet, I found a whole bunch of healthy fats, and high protein works great for this, Look for good complete proteins from vegan non dairy sources. You HAVE to stick to safe brands with these. I would suggest pumpkin seed protein from Oregon Seed Oil Co on amazon, really high in zinc and complete amino acid complex with healthy fats and even vitamin K. And Jarrow Hemp is another good one along with MRM Sacha Inichi powder(taste like peanut butter). I also use 3 blends in shakes on rotation MRM Veggie Elite, Nutra Key V-Pro, and Jarrow Plant blends. I found some breads, from Julian Bakery that are nut based chock full of potassium healthy fats, and gluten free that are GREAT toasted. I have posted recipes for flat breads, garlic breads, cheddar biscuits in the recipes section that might be of some help in getting fats and protein in.....I know there are some other things I am forgetting.

l drink/drank a ton of Ensure so lm not sure if l have any deficincies at this point, although the vitamins in these drinks arent always absorbed properly.

 

And l felt like l was absorbing nothing anyway with the weight loss, l got a scale which l never had in my own place, l would wake up 3-4 lbs lighter the next day after heavy eating, regularly. l hate to say l ate some real garbage but before considering gluten could be a factor l was doing fast food 4-5 times a week, with Boost or Ensure, and a regular meal before or after work.

 

l would get up to 102 at best and lose it! l hover around 101, l really thought what l guess turned out to be bloating or constipation was weight gain when l got to around 104, but it mostly disappeared after a huge BM(TMI?) 

 

Thanks for your post, l love a lot of healthy food and vegetables, but am terrible at meal planning and cooking. l've been eating the same thing almost daily or for days at a time, then switching up since being gluten-free. Tons of meat, too much dairy. l think l'm fine with dairy but  l am basically eating huge meals  at home since l have to be careful out, it's a little intense lol.

[Ennis-TX]

1 hour ago, BlackShoesBlackSocks said:

l drink/drank a ton of Ensure so lm not sure if l have any deficincies at this point, although the vitamins in these drinks arent always absorbed properly.

 

And l felt like l was absorbing nothing anyway with the weight loss, l got a scale which l never had in my own place, l would wake up 3-4 lbs lighter the next day after heavy eating, regularly. l hate to say l ate some real garbage but before considering gluten could be a factor l was doing fast food 4-5 times a week, with Boost or Ensure, and a regular meal before or after work.

 

l would get up to 102 at best and lose it! l hover around 101, l really thought what l guess turned out to be bloating or constipation was weight gain when l got to around 104, but it mostly disappeared after a huge BM(TMI?) 

 

Thanks for your post, l love a lot of healthy food and vegetables, but am terrible at meal planning and cooking. l've been eating the same thing almost daily or for days at a time, then switching up since being gluten-free. Tons of meat, too much dairy. l think l'm fine with dairy but  l am basically eating huge meals  at home since l have to be careful out, it's a little intense lol.

Diary might not be hurting or causing discomfort but your probably not getting all the nutrients from if it your not producing enough enzymes to break them down where you can. Might suggest either changing to a different protein source like I suggested for a shake, Pioneer Labs makes a Celiac Shake. Yeah I am attempting to body build with this disease and all my allergies....yeah its like a 2 step forward 1 back...then all of a sudden you think your doing great then wake up one morning hurting and sore, realized you dropped 5lbs over night and your body cannibalized itself....Happens when I sleep through my middle of the night protein shot.....I find I have to eat every 4-6 hours. Yeah meal preps...I tend to stick to omelettes or stir fry in the morning with a nut based toast or pour the egg mix with nut flours, butters in it into the waffle maker. (12 egg omelette mix makes about 8 waffles). Normally have a lighter porridge lunch, or a protein bar, shake or stir fry and HUGE 4-6 cup batch of protein nut milk/butter icecream with 2-3 scoops of protein powder and a 6 egg omelette for dinner.....I have tones of extracts and seasoning so I just change them up all the time. I change out the nuts I use, the seeds I use, and the green veggies i use to keep it on a rotation and prevent issues. I use nutritional yeast in everything just about. I always make sure I have a balance of all nutrients with my veggies, nuts and seeds. important to make sure your getting enough fats also, I munch on cocoa nibs, coconut bread, and almonds/almond butter all the time snack on seeds, and keep a protein shake on hand at all times to sip on.   PS I am 5'11" up have put on weight from 127lbs last month to a new morning base of 129-130. I work out daily been doing more weight sessions as of late and core work.