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SabrinaLuvsGluten

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SabrinaLuvsGluten Apprentice
SabrinaLuvsGluten
Posted

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
gf4life
Posted

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
SabrinaLuvsGluten
Posted
  • Author

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
SabrinaLuvsGluten
Posted
  • Author

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
tarnalberry
Posted

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
SabrinaLuvsGluten
Posted
  • Author

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
tarnalberry
Posted

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
SabrinaLuvsGluten
Posted
  • Author

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
antmimi
Posted

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
Kasey'sMom
Posted

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
celiac3270
Posted

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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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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