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Please Tell Me What You Think... Advice.

boriquaabe718

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boriquaabe718 Rookie
boriquaabe718
Posted

HEllo. I am a 36 year old male who has suffered from a lot of nagging and mysterious health ailments that as i get older are troubling me... i will list them all and some diagnosis I have gotten that led me nowhere...

1) I wet the bed until i was at least 12 yrs old and I was not breast fed.

2) I got some fungal infection on my feet as a child that would crack and bleed so the doctor treated it with some cream I imagine a steroid cream and put my feet in plastic bags.

3) I got recurrent ear infections.

4) I had conjuctivitis 3 or 4 times.

5) I got jock itch on the side of my groin as a kid and now as an adult it migrated to my buttocks. It itches alot and the only thing that controls it is cortizone and I have been putting that on there since I was a teenager.

6) I had acne my whole life.

7) I get cramps in weird places like my throat.

8) I've suffered with depression and anxiety attacks.

9) when I burp there is a gurgling sound.

10) I have the foulest smelling gas and when it doesn't get expelled the pain is so severe it feels like someone is stabbing me.

11) My stomach gets so bloated it looks like I'm pregnant LOL.

12) I've had eczema on my legs for about 7 or 8 years.

13) When I get the flu it's pretty bad and I can't regain my strength for at least a month.

14) One doctor told me I tested positive for H Pylori and another said My Sprue levels were high.

15) I'll get bouts of diarrhea and once in oakland me and my girlfriend had some pizza and I had diarrhea for 4 days straight and I mean about 10 times a day it wouldn't stop.

16) I will get intermittent bouts of insomnia and lately they've been worse.

17) My sinuses will often become plugged and I snore.

18) I get warts.

19) I bruise easily and I once noticed when I took a nap on a park bench for about an hour, later that day I had the pattern of the bench imprinted on my back for a day or two.

20) My energy levels are low my strength is diminishing as I age.

21) I had 4 surgeries in the past year to repair a retinal detachment.

OK... I know it sounds bad but I've been able to enjoy my life none the less and I know some of these are unrelated. But the SPRUE levels being HIGH concern me and at the same time the H PYLORI seems to be similar. I am going to have a full IGg food allergy test done because I have always suspected it and I am going to go gluten free for a while. Anyone know how to eradicate that H PYLORI??? and can anyone make some sense out of all this??? is there a pattern??? anyway thanks for the time ABe

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Mtndog Collaborator
Mtndog
Posted

So many of your symptoms sound like me/others before going gluten-free

horrid chronic ear infections (gone- only one in the 4 years I've been gluten-free!)

chronic eczema in my ears- they would crack and bleed (gone!)

acne (mostly gone)

bloating

fatigue

OK... I know it sounds bad but I've been able to enjoy my life none the less and I know some of these are unrelated. But the SPRUE levels being HIGH concern me and at the same time the H PYLORI seems to be similar. I am going to have a full IGg food allergy test done because I have always suspected it and I am going to go gluten free for a while. Anyone know how to eradicate that H PYLORI??? and can anyone make some sense out of all this??? is there a pattern??? anyway thanks for the time ABe

Does your gas smell like sulfur/rotten eggs- for my doctor that was the dead giveaway. It's malabsorption which means your body isn't absorbing the nutrients it needs.

If you are going to pursue testing (especially a biopsy) don't go gluten-free yet. Wait for the bloodwork (can you find the doctor who said you had high sprue levels?). If your bloodwork comes back positive, go gluten-free. If it doesn't, then it's up to you but I would say with your symptoms, going gluten-free could NOT hurt. You may be pleasnatly surprised at how much it helps!

Welcome to the board!

ang1e0251 Contributor
ang1e0251
Posted

make sure you get the full celiac panel. Then no matter what the results, push for a biopsy.

boriquaabe718 Rookie
boriquaabe718
Posted
  • Author
make sure you get the full celiac panel. Then no matter what the results, push for a biopsy.

I have had 5 surgeries this year I don't think pursuing the biopsy is something I can do right away... I am going to find the doctor who initially said my SPRUE count was high... I don't know exactly what test he ran that showed him my SPRUE count was high ... will they give me copies of the results? and these tests were done about 5 or 6 years ago and some of my symptoms have gotten worse. Another question: is there a die off when you go gluten free?

boriquaabe718 Rookie
boriquaabe718
Posted
  • Author
So many of your symptoms sound like me/others before going gluten-free

horrid chronic ear infections (gone- only one in the 4 years I've been gluten-free!)

chronic eczema in my ears- they would crack and bleed (gone!)

acne (mostly gone)

bloating

fatigue

Does your gas smell like sulfur/rotten eggs- for my doctor that was the dead giveaway. It's malabsorption which means your body isn't absorbing the nutrients it needs.

If you are going to pursue testing (especially a biopsy) don't go gluten-free yet. Wait for the bloodwork (can you find the doctor who said you had high sprue levels?). If your bloodwork comes back positive, go gluten-free. If it doesn't, then it's up to you but I would say with your symptoms, going gluten-free could NOT hurt. You may be pleasnatly surprised at how much it helps!

Welcome to the board!

What is the difference between a positive test and a high SPRUE count?

boriquaabe718 Rookie
boriquaabe718
Posted
  • Author
So many of your symptoms sound like me/others before going gluten-free

horrid chronic ear infections (gone- only one in the 4 years I've been gluten-free!)

chronic eczema in my ears- they would crack and bleed (gone!)

acne (mostly gone)

bloating

fatigue

Does your gas smell like sulfur/rotten eggs- for my doctor that was the dead giveaway. It's malabsorption which means your body isn't absorbing the nutrients it needs.

If you are going to pursue testing (especially a biopsy) don't go gluten-free yet. Wait for the bloodwork (can you find the doctor who said you had high sprue levels?). If your bloodwork comes back positive, go gluten-free. If it doesn't, then it's up to you but I would say with your symptoms, going gluten-free could NOT hurt. You may be pleasnatly surprised at how much it helps!

Welcome to the board!

My girlfriend of 7 years has always told me my gas smells like sulphur and after I read your post I was with my niece and I passed gas and she asked me... uncle did you fart and I said yes and asked her what it smelled like and she said and I am totally serious she said rotten eggs...lol then my girlfriend came home and I wanted to jog her memory and I asked her what do you think my gas smells like and she said rotten eggs... and then I told about your post and asked if she remembered saying my gas smelled like sulphur...anyway it was total synchronicity and ironic...what a laugh...lol

ang1e0251 Contributor
ang1e0251
Posted

I have had 5 surgeries this year I don't think pursuing the biopsy is something I can do right away... I am going to find the doctor who initially said my SPRUE count was high... I don't know exactly what test he ran that showed him my SPRUE count was high ... will they give me copies of the results? and these tests were done about 5 or 6 years ago and some of my symptoms have gotten worse. Another question: is there a die off when you go gluten free?

That's a good idea. You should be able to get copies of those tests with no problem. I asked for my daughter's test results from 8 years ago and had them in the mail that week.

Die off? I don't know. Some folks report withdrawal symptoms.

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foodiegurl Collaborator
foodiegurl
Posted

I can't answer most of what you asked, because I am new here too. But I did want to address the h.pylori. I have it as well, I found out about them at the same time. Well, the Celiac was a surprise.

Anyway, for the h.pylori they want me to take massive doses of antibiotics to eradicate, which i know is the "normal" procedure, but I have not done it yet. I am already allergic to 3 different antibiotics, so I am nervous to take 2 more at such a high dose. But, if I had no antibiotic allergies, I am sure I would have done it by now.

I hope you get some answers!!

And yes, you should be able to get your test results. I have done it with several doctors over my 36 years =)

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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    • NanceK
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    • Wheatwacked
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    • Scott Adams
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      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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