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Possible Gluten Problems, A Mixture Of Problems, Or Not. Unsure Where To Go

dustout

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dustout Newbie
dustout
Posted

Apologies for the long post. I've been to a few doctors and they seem puzzled. Any thoughts are appreciated. I'm unsure which type of doctor to seek next as I've been kind of going in circles.

 

2 years ago

* Started getting hives often. Sometimes dermagraphism (rub my skin and I'd get red marks and sometimes even welts).

* Sometimes I would get headaches, increased itching.

* Heavy eyes, dizziness, feeling 'buzzed' like on a drug.

* This all seemed to peak around 2.5 hours after eating.

 

1 year ago

* Started Paleo diet. Things got much better but occassionally still happened. I still didn't think of it being tied to food too me.

 

3 months ago -- just turned 30 years old.

* Weened off zyrtec to try and see if there was a bigger pattern to all this

* After off zyrtec I discovered a fairly solid corilation between eating and getting issues about 2.5 hours later.

* I started tracking my food intake. It's been hard to isolate things. I've been better at finding things that DONT cause me issues due to accidental ingestion of what I was trying to figure out was causing issues.

* I'd sometimes get little bumps on the back of my neck that would pop after a few hours and leave an invisible but feelable rough crust for a day or so.

* Itchy all over, starting usually at the back of my neck around the hairline, or on my hands or feet.

* A few weeks back I got eczema dry, thick rough skin on most of my knuckles. I've never had anything like this before in my life. My joints all were sore when bending them like arthritis or something.

* A week ago my left big toe started hurting on the bottom tip on pressure -- like the bone was sore.

* A few days ago the second toe on my right foot (next to big toe) started doing the same thing.

* Sore lower back off and on.

* EXTREME tiredness after some meals to the point I can barely stay awake. My eyes get sooo heavy. Some of the things include: Blue Bell Choc chip cookie dough icecream, Ensure (strawberry flavor), the multivitamin I used to take, a fried pecan pie. -- Not the healthiest things I know but I've eaten other unhealthy stuff like it without these problems.

 

1 week ago

* Started taking Glutamine supplementation powder + gatorade + folate (metafolin).  This seemed to make my gut heal quickly. Coincidence? I don't know.

 

A scratch test found me reactive to:

* Cats (including my own cat)

* Egg

* A sample of my coromega fish oil supplements (which contain egg)

* Wheat

* Avocados

 

Milk was negative but I seem to recently be lactose sensitive (extreme bloating, soreness, constipation) when I used to be able to consume it just fine.

 

I know Celiac does not result in a positive reaction but I've read that celiac increasing intestinal permeability can result in a wheat allergy on top of everything else.  I also read it could result in other allergies.

 

Bloodwork:

* H. pylori blood - Negative

* H. pylori breath - Negative

* ANA - Negative

* Rheumatoid factor - Negative

* CBC - All normal

* UA - All normal

* Kidney function - All normal

* Cholestoral type stuff - HDL excellent, overall a bit high but not extreme

* Fasting glucose - Normal

* Glucose in 10 min intervals after eating - Slightly overshooting drop after eating but not out of range. Not reactive hypoglycemia.

 

Some questions:

* I went off gluten for a while and then did a gluten challenge.  I had no new problems the first week of my challenge.  A week into it I started having issues again. Is that typical or does that sound like it was not the gluten after all and something else I was ingesting?

* I have not done a specific egg challenge yet but there's been a lot of correlations of egg and problems. Could an egg allergy be causing me problems that last even when I'm not ingesting it? Like it damaged my intestine so I'm having issues until it heals? I was taking Coromega fish oil daily for years and it had egg in it.

* Do you have reactions to gluten 100% of the time? It seems like if I eat a problem food when my stomach does not already hurt then I'm fine but if I eat it when I'm sore then I'm guaranteed to suffer.

 

I'm torn between going to another Internal Medicine doctor or going to a Gastroentologist next to try and get a lower & upper scope done.  Suggestions?

 

Thanks to anyone who replies.  I know it's a lot but I am trying to be thorough to help paint the big picture. :)

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GFinDC Veteran
GFinDC
Posted

Welcome Dustout,

 

Have you had the celiac antibodies testing yet?  It is simple testing, they just take a blood sample to send for analysis.  That's the first thing to do before an endoscopy even.

 

Reactions vary among people.  Some people have quick reactions and others have delayed reactions.  Some people have no symptoms at all but still have celiac disease.  You should also ask for your vitamin and mineral levels to be tested.

 

The skin form of celiac disease is called dermatitis herpetiformis (DH).  DH causes a rash of blisters that itch.  They test for it by taking a biopsy sample of the skin next to a blister, not in it.  Having DH means you have celiac disease.  But people with DH don't always have severe GI symptoms or high blood antibodies.  The antibodies go to the the skin instead.

 

Celiac disease antibodie tests

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome Dustout!

 

Ditto to everything GFinDC said.  If your Celiac tests come back negative, you could still have non-Celiac gluten intolerance, gluten sensitivity, or other food intolerances/allergies (or of course it could be something completely different).  One thing you can do to figure out what foods are giving you problems is to start with a very simple diet of foods that are highly unlikely to give you any issues.  Plain chicken, green beans, etc.  Then after a few weeks or so introduce one additional food into your diet at a time - wait a few days to see if it is safe for you.  Then introduce another food, and so on.  It can be a bit of a hassle and can take awhile, but you'll find out exactly what you can and can't eat.  Also, keep in mind that once your body heals and calms down you may be able to eat some foods that you couldn't tolerate early on.  (For example, some with Celiac cannot tolerate dairy at first but over time they can eat it again with no problems.)

 

Good luck!

dustout Newbie
dustout
Posted
  • Author

Thank you for the replies.  That's a lot of very helpful information.  The doctors have not ordered any of those Celiac-specific tests yet.  They both seemed kind of unsure what it could be but didn't think it was related to Celiac or any type of food allergy which kind of baffled me after trying to read up on all my symptoms.  The last time I went in I felt like I was getting blew off like I was exaggerating things or making it up so I don't think I will be going back there. The last time I was there the doctor just said "Well what do you want me to do?" which was upsetting to here when I'm seeking help from a professional... I asked if he could refer me to some sort of specialist and he just said to go to a neurologist and maybe they'd know where to send me.  I tried to get them to order allergy testing but they refused so I paid out of pocket to get the scratch testing done. Bad experience with two doctors overall so far...

 

Would an internal medicine doctor, gastroentologist, or other type be best to go to for testing? My insurance allows me to to go without referrals. I'm not terribly experienced with the medical system and it seems exceedingly complicated figured out where to even go.

 

Thanks very much! :)

GFinDC Veteran
GFinDC
Posted

Hi Dustout,

 

It is hard to find a doctor that knows much about celiac disease testing.  It was considered a very rare disease for many years.  That is changing lately though.  It is sometimes helpful to find a local celiac disease support group and ask them if they can recommend a doctor.  Try searching for celiac disease support group and your are name or town.  There is also a doctors forum on this site that lists some.  Some of the celiac disease organizations have local groups, like CSA, GIG etc.

 

Allergies and allergy testing are different from celiac testing.  It's worthwhile to get both, doesn't hurt anything.  Sometimes allergists can order celiac testing, but more often it is ordered by a general practitioner or a gastroenterologist.

 

You can also order testing online at companies like Quest or US Health.  But the antibodies decline after you stop eating gluten so the tests are no good then.

 

Celiac Support Groups

https://www.celiac.com/articles/227/1/A-List-of-Local-Celiac-Disease-Support-GroupsChapters/Page1.html

 

The doctors section

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

 

Here are couple getting started threads with more info.  Test in the morning so read fast! :D

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

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