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SabrinaLuvsGluten

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SabrinaLuvsGluten Apprentice

OK, I got the first test results back...I wasnt eating the recommended amount of gluten before testing because I didnt know anything about it, so I am going to be going for testing again later. However, is THIS set of testing, I was neg for celiac, BUT my Ige was way out of range. The reference was 87.0 and my Ige level was 320.0. What does this mean????? Thanks for anyone who can help me. I am really worried and OFCOURSE its the weekend and I cant call the doctor or anything.

Sabrina


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gf4life Enthusiast

Elevated IgE indicates that you are having an allergic response to something. It could be something in the air, or something your eating, or a medication, etc.

It is a good idea to get together with your allergist next week and try to figure out what it is that is causing this allergic response so that you can avoid it in the future. As long as you are not having an anaphylactic response, then it is nothing to worry about. If however you start to have trouble I would get to an ER pretty quick.

I have elevated IgE everytime they test me. But then, I am mildly allergic to almost all pollens and such. I am severely allergic to alfalfa and house dust. Well, I live in a farming community, so there is alfalfa grown around here, and house dust is a little hard to avoid...I also react badly to the cotton when they are growing it here, although everyone keeps telling me that it is the defolients that cause the allergies, not the plant. I guess the chemicals they use cause a reaction from many people. All I know is that as soon as the cotton pops open aroung Sept/Oct until they harvest it in November I have horrible allergies!

As far as food goes, they only tested me for the top 8 allergens, and I am allergic to soy. I get severely itchy skin if I eat anything that contains the soy protein in it. I am okay with soy lecithin and soy bean oil, but I limit that anyhow, just to be sure.

God bless,

Mariann

SabrinaLuvsGluten Apprentice

Thanks, Mariann. I am just a nervous wreck about all the new "health problems" I have been having over the last 2 years. I just want to feel healthy again and I dont know what to do. It is so over whelming because I have a 21 month old and a 9 month old to take care of, and its so hard with all the problems Ive been having. It seems like I keep getting all these abnormal test results, and the doctors dont really explain things to me. Im wondering, since the allergist diagnosed me with idiopathic angioedema, if that could be whats causing the IgE level to be elevated. Its really scary to me..I hopefully will be able to get in to see him sometime next week, and I will post my findings.

Thanks again! Oh, I also remember that I was eating alot of maple syrup then, and EVERYTIME I ate real maple syrup after the first couple of times, I would get a huge headache and extremely foggy headed. Im assuming I am probably allergic to it. Isnt that awful?? I could eat the FAKE maple syrup, but apprantly the good stuff affects me. I am going to see if they can rast test me for maple syrup, though I have never heard of anyone being allergic to it.

Sabrina

SabrinaLuvsGluten Apprentice

Oh by the way...could it be possible that it was the gluten causing the allergic response, but not enough of it in my system to cause a postive celiac blood test?

tarnalberry Community Regular

IgE responses are classic allergies - usually described as watery eyes, itchy nose, etc. It is the immune response associated with histamine release in the body, and generally treated by antihistamines when appropriate. The celiac response does not use this immune pathway, it uses the IgG and IgA pathways instead. So, the two tests are not related, they check entirely different things. (You can't, for example, say anything about the brake fluid in your car based on the amount of gas in the gas tank.)

SabrinaLuvsGluten Apprentice

OK, I see. Well, I guess I better get whatever is causing it under control. I am actually on 2 daily prescription antihistimines, so I dont understand why my IgE is so high...I am also going to be seeing an immunologist next month, so maybe he can help...Only a few days back on gluten and already I am more irritable, and extremely gassy!! Also already getting headaches again....oh how fun! Thanks for your help guys..

Sabrina

tarnalberry Community Regular

Antihistamines won't change your IgE results - they simply "sop up" the excess histmaine in the blood. The histamine is released from mast cells when they are activated by IgE antibodies in the bloodstream. Antihistamines treat the symptoms, not the cause.


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SabrinaLuvsGluten Apprentice

Its just so aggravating because I dont know what could be causing it..and even more aggravating that the stupid doctors office didnt bother to call me and tell me about it, so I still may be consuming, or still may be around whatever is causing the allergic response. I had to CALL them and get them to mail me my results because I had not heard anything. UGH. I just cant wait to get all this under control. THanks for clarifying that for me

Sabrina

  • 3 weeks later...
antmimi Rookie

I had an allrgic reaction to millet today. Even after the epipen by body came up with hives all over it (90 % even under my hair)

My IGE is in the 300s too. My Dr. wants to do the scratch test on me. I told him no because I have had the scratch test done before and it was H@@@.

Now, I don't think I have an option. The pin test, has anyone had this done?

Kasey'sMom Enthusiast

Hi everyone,

I've had really bad allergies over the last three years also. I've always had allergic rhinitis but after the birth of my child I started having anaphylatic reactions. I really feel for anyone who has gone through this because it's sooo scary. On my worse days I would have more than one reaction. I had the prick tests done on my back and ID's done on my arms. With the ID's that give you a small shot right under the skin. I actually thought the ID's were less painful than the prick tests. My daughter had the prick test on her back but another Dr. just had us do the RAST test to make sure that the prick test was accurate.

I started taking anti-IgE anti-body injections a year ago. The shot has helped me so much. We had to expierment with the dose because of side effets. The medicine hasn't been on the market very long and has a few questions about safety. I am also taking allergy shots for my inhalent allergies. I hope that I can go off the anit-IgE shots after I reach my full dosage of my allergy serum.

I hope you find the answers and get relief really soon!

celiac3270 Collaborator

A member, Robert_the_Bruce tried to post, but used the report button, rather than the add reply button at the bottom of the page:

I have all the classic symptoms of Celiac, & went off Gluten for 2 weeks and felt amazing... I rang to make appt to confirm Celiac disease, and the doctor said I needed to be eating Gluten.  I went back on gluten for 1 week & had my test done, is this enough time as my results came back negative?  I was only off gluten for 2 weeks... can anybody help?

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    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
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      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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