Exploring different avenues

[ButIliketheGluten]

Hello all,

I just found this forum and I would like to introduce myself. I have recently been to the allergist due to a host of food allergies. Like, this is really not cool, I'm running out of stuff to eat! Over the course of 10 years or so, I've been to the allergist 3 times for skin testing. I've got horrible environmental spring, fall, summer, and even winter 'allergies'. Nothing has come up save for this last time: cat and dog.

I can't eat beef, I break out in hives, get miserably itchy, and oh yeah, the wheezing. Yet, I'm not "officially" allergic. Dairy gives me horrendous gastrointestinal issues. Most recently, I damn near had to go to the ER again after a reaction to almonds. The list goes on.

My Dx the last time around for the allergies was nonallergic rhinitis. That didn't tell me anything else, really.

Since nothing really showed on this round of testing, and a lot of my reactionary symptoms center around the itching, the doc ran a liver panel. I've seen the preliminary results and my AST, ALT, and GGT are elevated. Not astronomically, but outside of the "normal" range. At this point, I'll mention that I've got an aunt with Sjögren's, and an aunt with celiac disease.

I've had asthma since I was a teen, and digestive issues in the way of constipation for as long as I can remember. After a little bit of google-fu on this liver function thing, Celiac Disease cannot be ruled out at this point. I looked at the rather extensive list on the U of Chicago website for celiac symptoms, and I'll be damned if just about every single thing that's ever been wrong with me isn't on that list!

I feel like I'm going crazy with this right now, as celiac disease and/or Sjögren's are my primary suspicions. My mom's sisters are the aforementioned aunts so of course, my mom thinks I'm crazy for thinking celiac disease, but I really, really don't think it's even a stretch. I think it's a very viable possibility at this point.

I've naturally gravitated away from breads, pastas, etc because I'm trying to lose that last 10 or so. I haven't gone gluten-free, but hadn't really put two and two together with the malaise, fatigue, nausea until the past few days. I'll be damned, I feel like THIS COULD REALLY BE IT!!! Brain fog, bloating, headache, after eating gluten - crackers, wheat in my tofu product, bread. Oh, the stomachache too.

Keep in mind, while I'm glad that my aunt has many more food options nowadays, I've been wary of the gluten-free fad thing. For people that don't actually NEED to go gluten-free, it's unnecessary and ridiculous. Now that I'm looking at this possibility, there's a chance that I may be eating some crow with gluten free fixings. Ha.

While I wait to discuss this further with the doc, I'll be here, probably asking questions as I go. I'm not completely crazy for making this leap, am I?

[squirmingitch]

Nope, you're not crazy at all. You should be tested. But you MUST be eating gluten for ALL testing. I'm going to point you right back to the U of Chicago Celiac site:

Open Original Shared Link

AND make sure the doc orders ALL of the tests in the celiac serum panel:

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 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

AND make sure the doc knows your aunt has celiac disease.

[Judy3]

You are not crazy... I myself had a host of food allergies fish, seafood, nuts of all kinds etc...  for many years 24 to be exact.   I was retested this fall for all of them and many more and they are now gone... Not allergic to anything.  My allergist contacted my gastroenterologist and they together have concluded that the 'allergies' were triggered by undiagnosed Celiac which I was diagnosed with 5 yrs ago.   I have been strictly gluten free for the last 5 yrs and now the allergies have gone away as well as the damage in my 'gut'.. Our immune system resides in the gut, so if the Celiac was destroying the gut undiagnosed for years ( I was the sick kid in the family) then it could trigger some pretty intense other autoimmune reactions that would not be recognized as 'traditional' Celiac symptoms.   As I said I've always had stomach issues but not bad enough to slow me down until 7 yrs ago, then I was a mess.  Stomach pain, nausea, diarrhea, fatigue, insane muscle pain and joint pain..   I've had blood tests, biopsies, and genetic testing and was finally diagnosed based on the biopsies and the genetic tests as my preliminary blood tests were negative.  We know now that the original tests were negative because I was so sick I was living on cottage cheese and jello at the time and they are both gluten free so I was not consuming anything.   I remember my gastro doctor saying two things to me.   1.  There are only two things in this world that can make your insides look like raw meat and that's cancer and Celiac. He knew I didn't have cancer because he did that biopsy first.  2.  Now that you are diagnosed you have to be strict with gluten free for the rest of your life and I bet the allergies either go away or get better.. (that was 5 yrs before the allergist!!!)  

Gluten free eating is not difficult at home, sometimes scary eating out and always scary eating at other peoples houses.   Christmas eve my cousin was excited that she had gone out of her way to make most of the food gluten free and then proceeded to take a cracker and run it through the shrimp dip I had brought.   I put a spoon in it on purpose and we discussed it about guiding the guests to take some on their plate and not dip crackers but that didn't happen so I had coffee and caramel corn (that I made and brought) that night .   I laugh at this because it's a learning curve..   But I digress... My comment was supposed to be about you not being crazy about the allergies it's a real thing.. I am living proof. !!!  

 

 

[ButIliketheGluten]

Oh thank goodness. I appreciate your input. I will GLADLY trade gluten for nuts, I LOVE almonds! Well, I did until they almost killed me two months ago. This whole thing has been a bit of a nightmare. I feel like I'm navigating a minefield here like: "what's going to make me sick next?"

@squirmingitch, I take it that you get itchy too?

Upon reading up on the gluten testing like the link you sent from U Chicago (My mom takes my aunt there, btw), I've been going heavy on the gluten today and yesterday. Oh. My. Lord. I feel absolutely disgusting!! I thought I was just avoiding crap, but I may have inadvertently been avoiding the gluten load. I have to do this for 12 weeks?!

And upon FURTHER reading by ACTUALLY going to the link you sent, I can get away with 1/2 a slice of bread or a cracker a day! I think this will make me happier than all of the crap I've managed to eat the past two days. Yuck.

Any which way this goes, I feel like I'm on the right track.

THANK YOU!!!

[squirmingitch]

If you go to the U of Chicago Celiac Center then they actually know how to test correctly. Yes, I get itchy -- I have dermatitus herpetiformis (dh for short) aka the celiac rash. 60% of the time those with  dh test negative on the blood panel. Dh is most often dx'd via a skin biopsy but 99% of derms do the biopsy wrong. Again, if you go to Chicago then they will do a proper skin biopsy. You still have to eat the gluten though even for the skin biopsy. Do NOT take any oral steroids or steroid shots within 2 months prior to testing.

Some find it easier to eat the gluten right before bed & hopefully sleep through some of the worst effects so you might try that & see if it helps at all.

You are welcome!