Maybe a celiac- weird situation- need help

[celiac1993]

I am a 23-year-old male that has a life long rare anaphylactic allergy to dairy but other than that am in shape and based on doctors analysis "healthy." This all started a  year and a half ago or so, throughout the experience people had told me I could be celiac but I never really considered it. So a couple years back I developed this issue that caused inconsistent intestinal pain, inconsistent bowel movements (mostly diarrhea) and most uncommon a sore what I now believe to be "lymph node" in my groin. At first, I thought it was just intestinal issues, I was going through my third year of college and had just gone through a couple years of crazy partying and thought it was maybe coming back to bite me in the behind. I had a period for the next six months where it lasted but was inconsistent, the lymph node would feel better after bowel movements and things were okay. I was starting my first job and kind of put it aside for a bit. About 8 months ago now, the pain in my lymph node turned to swelling in my groin and left testi (the side with the affected lymph node). It then starts when I got erections that it would cause a pain in my testi, almost like a pulling feeling and would eventually lead to myself having to stop any activity in that area do to pain. It was inconsistent, but it was definitely there ever 1-3 days and flared up very bad at times. the bowel movement issues and uncomfortable stomach feeling continued to get more chronic (I had other weird signs too, uncalled for fatigue, severe rashes, breathing issues). After months of tests for hernias, infections or other issues through blood, urine stool nothing was coming back. I finally went to see a very decorated allergist who is a legitimate doctor allergist, with degrees. She says I could be a celiac again, so before going for tests I stop eating gluten completely. Two days later my testi and groin swelling disappears, now 12 days later it is still gone, hasn't come back and this is not in my head everything feels SO loose, not even one sign or incident. My energy feels great, however, I did suffer from a rash and the stomach and inconsistent bowel movement issues are still somewhat there (although getting VERY better every day). I had a colonoscopy done a few days ago and I have nothing serious (crohns, colitis etc) but for the bio results to come back, it takes weeks (the bio tests can show signs pointing to celiac). I am now paranoid it's some weird form of IBS or something, but the swelling in my groin, testi and lymph node pain, rashes and fatigue doesn't make sense for IBS and there is NO DOUBT that many of them have essentially disappeared since stopping gluten. I am just wondering if anyone knows if it is common for it to take some time for the stomach/bowel symptoms to clear up and if what I have sounds like a potential form of celiac? My body has always been very strange with food allergies (hence my dairy allergy), oh and I have completely stopped drinking for essentially over 6 months so that isn't an issue (sorry about the length).

[cyclinglady]

There are 300 symptoms for celiac disease and many overlap with other diseases.  There is no way anyone (even a doctor) who could diagnose you based on symptoms alone.  To learn about testing:

Open Original Shared Link

The problem is that you need to be on a gluten diet for ANY celiac test to be accurate.   Learn more about a gluten challenge: 

Open Original Shared Link

BTW, a GI is a doctor who is most knowledgeable about celiac disease which is an autoimmune disorder and not an allergy.  Keep us posted on the bio card.  If negative, I would suggest asking for a complete celiac panel after you have been on a gluten diet and if you choose to seek a diagnosis.  

[Jmg]

Hello and welcome

You've found a good site and maybe you've found your answers too. Your symptoms could all be explained by celiac, for example, take your pick:

https://www.celiac.com/gluten-free/search/?q=sore groin&start_after=any

It would also explain your lifelong dairy issues, fatigue, rashes, 'IBS' etc etc. It's like the chameleon of conditions!  

  On 5/3/2017 at 3:25 AM, celiac1993 said:

I had a colonoscopy done a few days ago

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This won't detect celiac. Normally you would have an endoscopy (probe down your throat) to check the small intestine for damage. In fact, although your allergist sounds like they were on the right track for suspecting celiac, they should also really have told you to stay on gluten until tests could confirm or exclude it. Sadly you need to be eating gluten regularly for the tests to work. 

  On 5/3/2017 at 3:25 AM, celiac1993 said:

I am just wondering if anyone knows if it is common for it to take some time for the stomach/bowel symptoms to clear up and if what I have sounds like a potential form of celiac?

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Yes and Yes! No-one here can diagnose you but you really do sound as if your on the right track. Your next step has to be to see your doctor and ask to confirm or exclude celiac. Here's some reading for you so you can go in prepared. Here's some more:

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

The good news is that in time all your symptoms could resolve on a strict gluten free diet, although it could take a few months or longer for some things to resolve. The bad news is if you want the diagnosis you may have to get back on gluten and suffer a little longer. Don't be fobbed off, you have a very strong case. 

Best of luck! 

ps, Cyclinglady's just beaten me to it! Listen to her and the others here, they helped me a lot, hope you get all the help you need here too.

 

[GFinDC]

Hi celiac1993,

You do need to keep eating gluten for the celiac testing to work.  A single cracker or slice of bread each day is all it takes though.  Gluten is a protein in wheat, rye and barley.  There are some celiacs who have an immune reaction to oat protein too.

Switching to a diet of whole foods of meats, nuts, veggies, and eggs and avoiding processed foods is the fastest way to heal and recover.  I suppose you already avoid most processed foods due to your dairy allergy?  You may have some vitamin and mineral deficiencies that need to be addressed from malabsorption.  Your doctor can test you.  The testing process is blood antibodies first and then an endoscopy for tissue biopsy of the small intestine.  Often there is a wait to get a GI (gastroenterologist) appointment for the endoscopy.  The Gi's tend to be very busy.

[celiac1993]

Thank You All for such quick, detailed responses! I am just getting some work done for the day, later I will take the time to thoroughly examine and respond to your current responses. Once again Thank You all it is much appreciated!

[celiac1993]

I actually had an endoscopy as well(sorry forgot to mention), so once the biopsy comes back should have a better idea. My lymph node has gotten really, really sore but gut wise I feel so much better and the swelling is still gone. I'm wondering if the lymph node is sore from my body recovering from the gluten induced trauma. I hadn't gone a week without a seriously bad day since 8 months before, now 12-13 days in or so and everything is good....except for the painful node. I'm thinking maybe I should go get that checked now as well. I am eliminated all packaged foods just to be sure. Does anybody know if any really reliable gluten-free products like bread and such? I'll keep you updated with the biopsy results as well. Look into the celiac panel, Thanks Again!

[Jmg]

  On 5/3/2017 at 7:00 PM, celiac1993 said:

I'm thinking maybe I should go get that checked now as well.

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It can't hurt to have it checked out.

Well, I'm saying that, I guess it depends on the doctor

  On 5/3/2017 at 7:00 PM, celiac1993 said:

Does anybody know if any really reliable gluten-free products like bread and such?

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Where do you live? I'm in the UK so my suggestions may not be of use!

 

[celiac1993]

Ahhh yes, located Canada/US. Probably not applicable over here. But in terms of the nodes, it looks like from online its attached to your immune system a lot of the time, I was under the impression celiac disease attacks the immune. It makes the fact that my nodes are sore somewhat logical, at the same time you read things about lymphoma and such... I have had many ultrasounds as well not sure if that would detect anything or not, but they looked at the inflamed area at the time, said it looked fine. 

[GFinDC]

Hi Celiac 1993,

Celiac is an autoimmune disease, which means the bodies immune system attacks itself.  Lymphoma can happen with celiac, but it is rare.  Much more common is for the celiac's immune system to attack other body organs like the thyroid, or nerves, skin, joints etc.  Hashimoto's Thyroiditis is a AI (autoimmune) condition that hits the thyroid.  DH (Dermatitis Herpetiformis) is an AI condition that attacks the skin.  AI conditions tend to like each other or travel in groups they say.  Some of the celiac related genes are linked to other AI conditions.