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

Celiac Disease Or Wheat Sensitivity?

dh204

Recommended Posts

dh204 Apprentice
dh204
Posted

Hi everyone,

I'm new to this forum, but I was wondering if anyone could give me some advice...

I was diagnosed with a wheat sensitivity a few years ago, after a blood test was done. I was originally diagnosed with chronic fatigue syndrome. Anyway, after the wheat sensitivity diagnosis, I noticed that I was constantly breaking out with pimples on my face, and nothing would cure the acne, not even visits to the dermatologist. After trying everything, I finally stopped eating wheat products and noticed a vast improvement. I also went to see my allergist (I also have really, really bad sinus allergies) and asked her about wheat allergies. She performed a skin test, and I showed a reaction to wheat and soy, but not dairy, corn, or rice. The skin reactions were not very bad (compared to the skin test I had had for various other allergens, such as pollen and dust).

Anyway, I've been on a relatively wheat-free diet for some time now (with the occasional relapse one in awhile) and I've been okay. I have noticed, though, when I eat a little bit of wheat, like a cookie or a bite of bread or something, I usually break out with acne on my face anywhere between 2 weeks or 1 month later. I also tend to have stomachaches and feel extremely tired. Recently I started to break out with eczema, and I suspect that it's dermatitis herpetiformus (I usually get them on my legs and elbows, small red raised spots that itch like crazy and resemble a rash).

My concern is that I may actually have celiac disease rather than a wheat allergy. Does anyone know if wheat allergies have the same symptoms of celiac disease? or can a wheat allergy eventually develop into celiac disease? I haven't had any recent blood tests or other testing done to confirm celiac disease; I've heard that it's difficult to determine celiac when one is already on a wheat free diet...

Thanks for any advice!

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

My tests all came back negative after eating nearly wheat free for three years thinking it was just a wheat problem. I noticed that the longer "most wheat" was out of my diet, the more sensitive I became to it. I got tested by enterolab. However, if you do have dh, that is a sure diagnosis of celiac, so you might get the sores biopsied, then you don't have to worry about the blood tests and intestinal biopsy.

Welcome to the forum. It's a great source of information.

ajay Newbie
ajay
Posted

Hi dh,

A question (for you and for others): if you know you're sensitive to wheat, does it matter one way or another if you get a celiac diagnosis? I ask because I am allergic to wheat. I go back and forth about getting tested for celiac disease -- I already know that eating anything wheat/wheat-derived will make me miserable, so does it matter if I'm not eating it because I'm allegric to it or because I'm celiac? I feel like the end result is the same.

I'd really like to know what people think about this.

Has anyone out there with a wheat allergy been tested for celiac disease? or decided not to be tested?

CarlaB Enthusiast
CarlaB
Posted

The only real difference would be if you were allergic to wheat only, then you would not have to avoid barley and rye. For example, if you did not have celiac, but only a wheat allergy, you could enjoy a chocolate malt!

ajay Newbie
ajay
Posted

::sigh::

Wish I could, but way back when, when I was first trying to figure out what I was allergic to, I discovered that Wheat, Rye, Barley, and Corn are all off-limits. I suppose there's a possibility of cross-contamination, yadda yadda, but again, it seems to me that the end result is the same. If I eat it, I am not a happy camper.

But I *could* have a chocolate milkshake! If I had to cut out dairy, I'd be crushed.

AndreaB Contributor
AndreaB
Posted

I am allergic to wheat, wheat gluten, spelt and rye on the gluten spectrum. Not barley or oats. I had carob chips a few weeks ago which are barley malt sweetened and also have soy lecithin. My infant son had an eczema reaction to them. Don't know which of those ingredients tipped him off. He doesn't seem to have a problem with me having rice dream milk but I'm thinking of trying to get used to pacific brand. I am also allergic to soy. I still have some eczema patches that haven't gone away, but they don't bother me very often. My family is being tested by enterolab to see if we have anything more than sensitivities but will probably remain wheat free anyway as well as soy free.

dh204 Apprentice
dh204
Posted
  • Author

hey everyone,

first of all, thanks for all the replies and advice!

The problem is that I'm not really positive as to what I am exactly allergic to (I know that I've definitely got wheat intolerance, but as for other grains, I'm really not sure). While avoiding wheat products, I usually end up buying gluten-free products. I'm living in France now, so the only wheat-free products are also only gluten-free.

As for getting tested, I am quite interested, because then it would be a lot more clear as to which foods I can and cannot eat. I am actually not quite sure that I have the DH eczema thingy, I looked at some pictures online the other day and it doesn't look exactly like the same thing (although it does look similar). My eczema is actually a little bit smaller and much more concentrated in the areas, and the red spots are not as big. I've already seen a dermatologist in France and in the US and it has been diagnosed as just regular eczema. I'm a bit skeptical about it because I've already had some sort of eczema before (which I believe was due to the hardness/softness of the water when I went between the US and France). Also in order to eventually be able to get reimbursed by the french social security system, I need to prove that I have celiac's disease which from what I've gathered so far, means an intestinal biopsy. I really don't want to have to reintegrate wheat again because I've noticed the enormous difference now that I've tried to cut out all wheat products. So I really don't want to go back to breaking out in acne all over my face (am only just getting over 2 enormous zits near my nose) and that weird eczema (which kind of comes and goes). The worst is the fatigue and stomach aches and the gas. I haven't tried eating oat (I never was a big fan of oatmeal anyway, so I've never really eaten much of it, but I did have some wheat-free oatmeal cookies once in the US and I seemed to be fine). I've also never really had much barley in my diet to begin with, so I don't really know about reactions to barley, but I do know that corn and rice are okay. I've just started reintegrating dairy and I seem to be fine, in fact, since I've started eating probiotic yogurt I feel a lot better now. It's just that now is allergy season so I'm trying not to eat too much dairy; I've noticed that my sinuses are much more stuffed up if I've been eating a lot of cheese and such.

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

There are a few of us on this board that are highly allergic to wheat and also tested positive for Celiac. My GP visually diagnosed DH when he gave me the results of the blood test. I have had small watery blisters on my hands, on and off, my whole life. They itched like crazy. I have only had them once since going gluten-free and that was when I delibertly injested gluten.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,476
    • Most Online (within 30 mins)
      7,748
    JA917
    Newest Member
    JA917
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mmar
      Refractory Celiac - doctor?

      By Mmar · Posted

      Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because my GI doctor thinks it could be refractory celiac. She told me that if it’s refractory, I would need to see a “specialist” because she doesn’t know enough.  I live in Philadelphia and the Celiac Center at Jefferson has 0 appointments with any doctors, I keep trying. Does anyone know of either a doctor in Philadelphia that treats refractory celiac or a doctor elsewhere that does virtual appointments to treat refractory? Thank you!
    • knitty kitty
      10 years later, my celiac is progressing

      By knitty kitty · Posted

      @GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods.  It's very restrictive, but it really helps improve gut health.  It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency.  Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes.  So drink tea between meals.  Choose a tea with lower levels of tannin, like green tea or Oolong tea.  Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract. Dairy; Rice, any brand, even after washing 3 times Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose.   Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten.  This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease.  Basmati rice is less likely to carry this protein chain and may be better tolerated.  Don't wash rice before cooking.  The added vitamins get washed away.  Some of those grains of rice are extruded vitamins.  They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks. Organic catchup, Potatoes; Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome."  Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed.  Catsup usually is acidic which can be irritating to the digestive system. Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour Often these contain cross contamination with gluten.  @Scott Adams recently posted a new article about this.  Gluten free products are not enriched with vitamins and minerals needed to digest and process them.  They are high in insoluble fiber and saturated fats.  These may also contain microbial transglutaminase, see below. Sausage, Any processed meat These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease.  We have articles about microbial transglutaminase, too.  Cassava also contains Thiaminase, an enzyme which destroys Thiamin. Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial.  So that's a good thing.  However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties.  Excess consumption of pectins can result in gas, bloating and diarrhea.   Bottled spices  There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms. Gluten-free dairy-free ice cream These can cause reactions if one reacts to oats.  Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms.   Smoke from a fire; Strong cleaning chemical fumes These contain Sulfites.  Developing a hyperensitivity to Sulfites is possible in Celiac Disease.  We can be low in vitamins and minerals needed to process Sulfites.  I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked.  Celiac Disease is another Hypersensitivity Type Four disorder. Packaged sweet potato chips; Packaged plantain chips;  Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO).  Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria.  Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract.  You change what you eat and you change what grows inside you.  You starve out the bad SIBO bacteria, repopulate and feed the good ones.  Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria.  Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat.   I hope this has been helpful.
    • trents
      New to all of this

      By trents · Posted

      Welcome to the forum @Newhere19! Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without endangering their health. But we also have had more than a few who have severe anxiety surrounding the endoscopy itself and cannot bring themselves to go forward with it. May I ask, what was your antibody score or scores, what was the name of the test or tests done and what were the ranges given for normal/negative vs. positive?  What symptoms do you have? What caused you to seek out celiac testing? And to answer your question, many on this forum have had to go forward with the gluten free diet without an official diagnosis for the reasons already stated. You should start seeing symptom improvement within weeks. But realize that achieving a truly free gluten lifestyle is more challenging than most of us realize at the outset. There is a real learning curve involved in order to achieve consistency. That is partly due to the many unexpected places gluten is tucked away in the food supply/supplements/medications and partly because of CC (Cross Contamination) issues. I will offer this primer to get you off to a good start:  
    • Newhere19
      New to all of this

      By Newhere19 · Posted

      I recently had bloodwork done with a GI specialist and was told that I have celiac.. .but they will not confirm the diagnosis without an endoscopy and biopsy. Due to severe trauma I cannot endure the endoscopy and they made it quite clear full sedation is not an option. So now I have to venture forward assuming this is in fact what is causing all of my symptoms. Has anyone else here had the same experience and started the gluten free diet to see if you're really suffering from celiac? If so, how long did you commit before safely saying the results are accurate? My thought was at least three months would be necessary. Much love to everyone ❤️ 
    • trents
      Gluten-Free Foods

      By trents · Posted

×
×
  • Create New...