Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Immunologist


lacey

Recommended Posts

lacey Contributor

Ok guys I need some advice! I have Celiac and have avoided gluten like the plague. It's been years and I still feel terrible all of the time.

I decided to see an immunologist and had extensive testing done. I was just certain they would have found something...but never did...thyroid is good and apparently I have no other illnesses, but I was really hoping to have a more official name for what I'm  going through.

They did a skin prick allergy test on my back for 60 allergens from foods, to mold, to pollen, pet hair, to grass...and the list goes on and on. I'm terribly allergic to every one! In fact they said I'm basically allergic to Colorado and should live in a bubble but can't.

My doc seems to think this is why my gut is a mess, I keep gaining weight, and feel like crap everyday. Can this be? I avoid the foods that came up anyways, and don't struggle with any type of seasonal allergy. I'm so confused.

I'm supposed to start getting injections two times a week, and was told over time this will make my immune system stronger and healthier. However, after all of this testing I blew up like a ballon and had to stay home from work today. I can't go through this each week ...

Not sure if this is allowed but I have a picture of how my back reacted and it shows what I'm dealing with here. 

Oh...and should add I am prescribed to take antihistamines heavily each day. Not sure if that's a good thing for my body or not...

Thank you!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gemini Experienced

Hi Lacey,

     I have many allergies myself and am currently doing the SLIT therapy, which is sublingual allergy drops.  It is the same thing as allergy shots but formulated for sublingual use.  I cannot get to an allergist once weekly because I work for a living so decided to try this method.

I have been gluten-free for 11 years now and my gut feels fine....no problems there.  But I am challenged on the allergy front and now that they have added the dreaded mold mixture to my serum, I am dragging around and feel less than stellar.  I am severely allergic to molds. I would not imagine molds would be a huge problem for someone living in Colorado but if you are reacting to some of them, they can really make you feel horrible.

The trouble with scratch testing is that it doesn't tell you how bad the allergy is....you just react and they know you have a problem.  I had a 15 mold panel blood test done but many docs do not believe in that kind of testing. It is very hard to trip a blood allergy test but I did and it showed I am allergic to 14 out of 15 molds.  Lucky me, huh? <_< But it gave me actual numbers with regards to severity so now I can repeat the testing periodically and see if those numbers improve.

Are you now receiving immunotherapy (allergy shots) as treatment?  I have done those in the past and they did work very well but it does take some time.  I would stick with it because its better than dosing heavily with allergy pills. As far as antihistamines are concerned, I take Benadryl at night before I go to bed. Children's Benadryl because I am a thin Celiac and the adult version knocks me on my ass.  If they are dosing you out on antihistamines during the day, you are going to be drowsy.  Maybe try taking one at night before bed?  That way, it helps you sleep and you are not walking into walls during the day.

Allergies are somewhat connected to the gut because your immunity begins in the gut.  80% of your immune system function comes from the gut so this is why a good diet is essential. You can see why allergies can be a huge problem with Celiac because of the gut issues we have.  Celiac messes with your gut and then you can develop allergies as a result.....the old leaky gut problem. I am not having any gut issues but you are.  So...maybe the food allergies are messing with your gut and in turn, your allergies have spun out of control.  Have you lived in Colorado a long time or most of your life?  The longer you live in the same place, the more likely you will develop allergies. You essentially become overloaded from constant exposure to the same things. I have lived in New England all my life so that has not helped. My BIL lives in Colorado and when I visit, I feel great! No mold to speak of or at least, different strains.

The only advice I can really offer is work on the gut and that should help you with the allergies. Continue immunotherapy because it can work very well. I understand what you are going through and the sucky thing is that with allergies, there is no immediate fix. The trick is to build up a tolerance with the shots. Use an antihistamine at night and no, they will not hurt you, long term. I have been using them for about 3 years and if I go off of them, I get hives.  The other thing that might be worth looking into is histamine intolerance. That can happen with Celiac and others on the forum have had that issue. Maybe someone else can chime in on that and give you better advice. You could try a low histamine diet and see if that helps you feel better.

Sorry you are suffering....I know how you feel. I hope you get some relief from the treatment and feel better soon!

lacey Contributor

Thanks Gemini!

its good to know that I may be on the right track! Thank you for your advice and kind words. 

I've lived in a Colorado forever...so that could play a part in all of if this. I still can't get over how badly I responded, but hopefully this means I'm on the right track. 

I'be tried researching the subject in regards to Celiac as well, but haven't had much luck. Starting injections next week and will keep everyone updated if I find success...though I know it will be a process. 

Thank you again!

RMJ Mentor

Hi,

Since you say you don't have seasonal allergy symptoms, I have some questions.  I used to work for a company that made the extracts used for skin testing.  (Extracts are standardized and if the tests are done correctly they CAN tell the degree of allergy).  Did you come up highly positive on every single test?  If so, did they do a control without any extract to make sure you're not one of the rare people whose skin reacts just to the scratch?  Also, did they do a blood test for total IgE?  Yours should be high if you really have that many allergies.

Gemini Experienced

The scratch testing doesn't give you much  to the degree of severity.  If you have the dermal injection type testing, they can measure the weal and have a scoring system for degree of severity.  WIth blood testing, you have to do IgE and IgG. I didn't even trip the IgE but the IgG testing was through the roof for molds. People don't always react typically with allergy testing, just like with Celiac Disease. 

You can also have mild allergies to many things and that can be as bad as a single allergy that is severe. it's the "rain barrel" theory. If there is underlying disease conditions or inflammation, mild allergies can be temporarily worse enough to make them test severe.  As far as not having seasonal allergy symptoms, they can be atypical.  My typical symptoms are fatigue and hives, not congestion or sinus infections like most people get.  Allergies are still difficult to figure out sometimes.  

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,114
    • Most Online (within 30 mins)
      7,748

    Vegan Brandy
    Newest Member
    Vegan Brandy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 
    • Erain
      Here’s the answer from the company 😊   Hi Emily,    Thank you for reaching out to us! We can confirm the Organic Protein + 50 Superfoods Powder is gluten free. The organic barley and wheatgrasses we use are harvested prior to jointing, before the grain forms and any gluten protein is present. Rest assured appropriate measures are taken to ensure our gluten free products comply with the FDA final rule to be labeled as gluten free, as claimed on the side-panel label. Our suppliers are required to verify each ingredient and in order to ensure that our gluten free products comply with the FDA requirements, our manufacturing facilities use the ELISA test method to confirm gluten levels are less than the standard limit of <20 ppm.    If you have allergy concerns about consuming the grasses, we recommend consulting further with your healthcare provider. I hope this information helps! Please let us know if you have other questions.   
    • Erain
      That’s great to know. Thanks Scott
    • trents
      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
×
×
  • Create New...