Jump to content

  • 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

Update: Just Wanted To Give People A Heads Up To Get Tested!

Guest Doll

By Guest Doll
in Related Issues & Disorders

Recommended Posts

Guest Doll
Guest Doll
Posted

I know I haven't been around for awhile (finally dragged myself away from the computer...I swear this board is addictive!), but I think this is important to mention. It may help someone. So here I am.

For those of you who know, I have always reacted severely to "gluten" and been very sensitive. My blood sugar and blood pressure also drop when I am glutened. I had more recently cut out casein. When I "cheated" on casein, which had never given me outward problems before, I began to have trouble breathing. Sooo....I had a suspicion that I have allergies as well.

Well, I was right. :( I actually almost passed out after the second test injection, which turned out to be wheat followed by "cow's milk". I turned pale and the nurse had me lie down in the ENT's office.

My allergy (IgE) testing results are in:

Must avoid 100%:

-Wheat (not much of a stretch ;)

-"Cow's milk" (don't know if I react to casein, whey, or both).

Don't have to tell me twice!

Also reacted to:

Eggs, potatoes, beans, tomatoes, RICE (which explains why I always get low blood sugar after I eat it), yeast, soybeans, fish, beef (apparently some people allergic to cow's milk also react to beef), and chicken. I am running out of things to eat! I am also not supposed to eat mushrooms, chocolate, or peanuts. It seems like all I can eat is napkins and cardboard. ;)

Not to mention I showed positive to all of the 9 inhalant allergens I was tested for. I am miserable, as I am always tired and have trouble breathing. That is scary, since I wake up at night breathless. I am expecting to get an asthma inhaler hopefully. Right now I am doing allergy shots, minimizing dust and mold exposure, and drinking Benadryl a la Hitch (if you've seen the movie, you understand). Heehee.

So, what I want to say is this: If you also react like me, PLEASE get tested for IgE allergies. If you have IgE food allergies, they may end up being an anaphalaytic reaction down the line. It's important to know if you have an actual food allergy on top of Celiac (or if you do not have Celiac but an IgE allergy instead). And allergies in many cases can be treated, so you can feel better.

P.S. For anyone who cares: In general, people with autoimmune diseaes (like Celiac) seem to have a LOWER risk for allergies. This is because the allergy immune response and the immune response seen in autoimmune diseases are on opposite sides of the spectrum (Th1 and Th2). BUT in a certain subgroup of people, they tend to have BOTH abnormal immune responses and a particular genetic defect. Google "IL 10" for more info.

So please, get tested if you think you may have food allergies! It may also be a reason why a lot of you are not feeling better.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Wow--I'm glad you were tested. Thanks for the heads up :)

I had the allergy testing about 9 months after my Celiac diagnosis, just to make sure. Thankfully, I was negative to all foods tested, including, of course, wheat.

Guest Doll
Guest Doll
Posted

Hi Patti! Glad you tested negative, Celiac Disease is hard enough! ;) I still am freaking out because I don't know what to eat!

mama2 Apprentice
mama2
Posted

I just got my referal to the allergist ... thanks for the heads up!

P.S. your right this board is addictive!

blueeyedmanda Community Regular
blueeyedmanda
Posted
I just got my referal to the allergist ... thanks for the heads up!

P.S. your right this board is addictive!

Yes so addictive I leave it open and minimized at work and sneak in replies :)

mama2 Apprentice
mama2
Posted
Yes so addictive I leave it open and minimized at work and sneak in replies :)

I hear ya! As soon as my kids are a sleep I am back on for a few...lol

VioletBlue Contributor
VioletBlue
Posted

I'm still trying to figure out why it would matter if I were allergic to wheat in addition to being Celiac? :huh: Isn't it a moot point once you're diagnosed with Celiac Disease? Celiac diagnosis means end of wheat consumption, end of gluten consumption. End of problem.

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

Celiac.com Sponsor (A8-M):


Guest Doll
Guest Doll
Posted
I'm still trying to figure out why it would matter if I were allergic to wheat in addition to being Celiac? :huh: Isn't it a moot point once you're diagnosed with Celiac Disease? Celiac diagnosis means end of wheat consumption, end of gluten consumption. End of problem.

I respectfully disagree. It sounds simple but it is not. When I'm glutened (wheat gluten) my blood pressure and blood sugar drop dangerously low. This happens from CC, which sometimes happens despite my best efforts. I have never "cheated" on the diet, but have still been glutened. Many of us here have. I also have trouble breathing when exposed to casein/cow's milk. My newest symptom is that my eyes swell up.

If it turns out you have a wheat allergy, it may become more severe over time. My "cow's milk" allergy certainly has. I was never like this before! Allergic reactions can be treated with Benadryl and may need an Epipen and transport to the hospital. Food allergies can be life-threatening. If one thinks they only have Celiac, they may not be prepared to handle an anaphylactic reaction if one occurs. In addition, some who think they have "intolerances" aside from Celiac may really have allergies, which may be able to be treated. Some allergists who are well informed are even trying to use *intradermal* allergy shots for (non-anaphylactic or less severe) food allergies. They have little risk for a systemic reaction, and seem to help.

For instance, if my severe reactions are caused by my wheat allergy and NOT simply Celiac, I can reduce the severity of my glutening reactions by popping a Benadryl. For this and the above reasons, I think it is important if people know they have an IgE allergy.

I thought I had explained this in my original post so it was easy to understand, my appolgies if it was not. :)

trents Grand Master
trents
Posted

Doll,

While it may be true that in general people with autoimmune diseases are less prone to allergies, the opposite is actually true for celiacs because of the damage to small bowel muscosa/leaky gut syndrome that allows larger than normal food protein molecules to cross over into the blood and be detected as invaders by the immune system.

Steve

num1habsfan Rising Star
num1habsfan
Posted

I totally agree with you that having an allergy AND intollerence makes things a lot worse. I had both wheat and dairy show up when I had allergy tests done (this was even after being gluten-free). It's been years but I know that it's likely why I react to both so severely.

Have you had asthma tests done??? I found it a huge help knowing just how severe it was, and I see my asthma specialist every 3 - 6 months for checkups.

~ Lisa ~

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.