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

Other Food Allergies/intolerances Or Minor Glutening?


Guest cassidy

Recommended Posts

Guest cassidy

I felt great a month or so after going gluten-free. Now, I'm not feeling as good. I keep having reactions, and I'm trying to figure out if I'm getting glutened or if I'm reacting to other foods I may be allergic to. I know dairy is not a problem for me.

Usually when I'm glutened my stomach hurts within 5 minutes and that lasts for about 4-5 hours. During that time I'm running to the bathroom. After that the headache starts which lasts a day. During that second day and up to 5 days later I feel anxious, shaky and jittery.

My recent reactions have been waking up with a bad stomach ache and having D once. My heart also pounds and I feel a little jittery but it goes away soon after going to the bathroom. I'm trying to figure out if I'm getting a little bit of gluten or if I'm eating something else that I'm allergic/intolerant to. I just don't understand how I go to sleep feeling fine and wake up feeling bad. I've checked all my toiletries and my husband's and nothing contains gluten. I don't eat right before bed, so I would think if I ate something bad in the evening I would react to it before going to sleep.

Also, I know when I eat strawberries, pineapple and kiwi my mouth feels burnt and and swollen, this isn't happening with my other problems. I don't know if those are typical allergic feelings or if an allergy could cause the D type of symptoms.

What symptoms do you get from other intolerances/allergies? Does this sound like another type of allergy, or a minor glutening?


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

I haven't any clear idea, so I'm just guessing off the top of my head, and I'm probably way off, but could it be fabric softener on your sheets, or feathers in your pillows? Or mold/mildew issues in your house?

Allergies are queer things, and , despite what the know-it-all doctors like to think, allergies don't always show up the way the doctors expect.

I have a friend whose daughter can't handle casein (a milk protein), but she never had stomach issues with it. What she had was constant ear infections, which they definitively traced to casein. Now she's off all dairy products--and hasn't had an ear infection since.

Another idea--might you be extremely stressed--either about the gluten or about something else? I know when I'm stressed, I get stomach symptoms, and it took ages before someone pointed out to me (I never would have figured it out myself) that I was clenching my tummy in.

Good luck--I hope someone else can come up with some better ideas--I'm just groping in the dark!

marciab Enthusiast

My doctor told me that your body does most of its digesting while you are sleeping.

You didn't say whether you were waking up at your normal time.

I have been waking up every morning at my normal time with the urge to have a bm (very loose, like a baby) after being on this diet for a month or two also. It was a good thing for me. I've had trouble with "C" for years.

I cramped really bad for about a week in the beginning, but not anymore, my body has adjusted. Now, I expect a bm in the am. This is the most regular I have been in my life. : )

My food allergy symptoms as far as I know are stomach cramps immediately and sometimes "D". Swollen lip, etc.

So, hopefully this is a good sign for you ??

Good luck Marcia

Guest cassidy

I usuallly wake up to pee between 4:30-6. Once I get up, that is when the stomach pain starts. I don't have to get up for work that early and certainly not on the weekends, so I would say it wakes me up. I don't think this is a normal/good thing because I'm in a lot of stomach pain and my heart is pounding. I feel think there is something bad that needs to get out, and once it does I feel much better. I don't think it is stress either.

Rusla Enthusiast

Allergy symptoms of varying types and degrees can very with everything be it food, fragrances etc. I cannot breath if someone walks in who has used dryer fabric softner. That is why I make my own dishwasher, fabric softner and many other things. I know what is in it and it is not harmful to me or the environment.

mrsnj91 Explorer

Coming from a history and family of FA and EA I would say your reactions are not allergy related. Allergy reactions tend to be more congrestion, hives, eczema, throwing up, sneezing, breathing problems, swelling of the face, etc. HOWEVER, that is not to say it 100% isn't as, like Celiac, people react to things differently. Food reactions tend to be more severe and generally react sooner than the time frame you mentioned. And EA certainly wouldn't cause diarrhea. KWIM?

Oddly...my son has been waking up with the same symptoms you mentioned this last week so I am interested to see if you find out what the cause is.

slpinsd Contributor

cassidy,

your symptoms sound VERY similar to my experiences. Before figuring out that it was gluten intolerant- after I ate, I would get an almost immediate pressure/pounding/spasming in my chest, and felt very jittery, shaky, anxious/panicky. I could not figure out if this was GERD, anxiety (except only happened after I ate) or some sort of immediate allergic reaction. Since going gluten free, after about 1 week, the chest pressure/GERD thing went away 90%. Over the course of the next few weeks, if I accidentally got glutened, I'd know it in a few minutes, because those "anxiety" (which, we both know, is NOT anxiety) symptoms would re-appear, and I would have difficulty breathing, weird heartbeat, and pressure in my chest.

I think you posted over on the Asthma thread I started. Then- come to find out the other day- I have asthma, exacerbated by the gluten/GERD connection. This sounds like what is happening to you. If I get glutened, I have joint pain (knees) and feel anxious, jittery, and depressed, fatigue, for almost a week. But- I had some food sensitivity IgG testing done- and sometimes I think some of those foods (especially dairy, sugar), cause symptoms similar to the glutening reaction. If you do in fact have asthma, I believe that other foods you are not "allergic" to, but "intolerant" to, could be causing the same type of reaction.

Have you had food IgE or IgG allergy testing done? That could help you to pinpoint what the cause is. Also, keeping a food journal has been helpful to me. Also, I just found out that I am allergic to dustmites. Most times, when I get the reaction, I have just laid down in bed. 1/3 of my life is spent in bed. I really think that the dust exacerbates the "asthma", which may already be exacerbated by the "gerd" due to gluten, or something else. Make any sense? In my experience, it is the factors of gluten intolerance and possibly other food intolerances causing the gerd, which, coupled with the dust allergy exacerbates the asthma, which together all causes the anxiety, jittery, shaky feelings.

Also, I was diagnosed with adrenal exhaustion. I have very low cortisol as well as very low DHEA, which is caused by significant bodily stress over time (before I removed the gluten from my diet). This, in itself, causes anxiety/panic/depression, and even though you may remove the source of stress, your adrenals cannot recover- thus your body overreacts to any type of stress. It's something to look into. I'm taking DHEA and pregnenolone. I sincerely pray that you get to the root of the problem.

Kristen


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

I have food allergies that take the form of severe wheezing, plenty of hives to itch and sometimes (but rarely thank God) my throat starts to close and I have just very short minutes to get an Epi-Pen into my thigh. I have learned that the worse thing you can do, when your throat closes, is to panic. You use up more oxygen that way. If I am going to eat out ANYWHERE, there is always an Epi-Pen in my purse. Since I have been gluten-free, I have only had to use the pen once. But, I use the nebulizer on a daily basis. Yesterday, I served sandwiches that had swiss cheese in them and I also served cottage cheese. It had been 20 years since I had had cottage cheese and so of course I had a small helping. I knew that I would wheeze miserably with the dairy, but I did it anyway. I immediately took a pill for the hives that would start and one for the itching. I used my nebulizer twice as soon as my guests left. Was it worth it - you bet :ph34r: . But, I only have a small amount of dairy once a month. I have not had a glass of milk in 20 years. Because I can get suprises with food allergies, I keep two small canisters of oxygen on hand.

Jen H Contributor

Hi Cassidy,

I had similar symptoms to the ones you describe when I first went on the diet. I was still feeling sick almost every day even though I was eating gluten-free food. I think it was my body's way of trying to mend. I didn't start to feel significantly better until 3-4 months into the diet.

I was tested for food allergies because I was always nauseous. I found out that I am intolerant to soy, and once I took it out of my diet, I felt a lot better. I also kept a food journal and started to notice trends when I ate soy or gluten inadvertantly. Allergy testing may be a direction you could head in. You could also try the elimination diet where you remove food from your diet for some time and then rotate it back in. An allergist or nutritionist could probably give you more info on it.

I hope you're feeling better soon.

Fiddle-Faddle Community Regular

They call celiac "the Great Pretender." Those symptoms of nausea, headache, and jitteriness can also be signs of low blood sugar, low blood pressure, high blood pressure, migraines, medication reactions, and probably a bunch of other things.

I wouldn't be surprised if celiac could CAUSE all those problems, too. Do you have a blood pressure monitor? It might be iinteresting to compare your blood pressure (and blood sugar, if that's possible, too--maybe you have a diabetic friend who can test you?) when you feel that way--and when you feel normal.

Claire Collaborator

I am not sure if I am adding to mrsnj91's post or disagreeing. I have been dealing with food intolerance - ie. Type II Delayed Food Reactions for 25 years - diangosed 15 years ago. Type I Food reactions - like the swelling of the tongue or throat etc. are quite different than Delayed Food reactions. The former can be life threatening, the latter can be miserable and in and of themselves create a viscious circle of food reactions - gradually limited the diet more and more.

Symptoms can include almost anything - some may be skin reactions with or without rash (I get bone rattling chills), itching - some localized and sometimes the head to toe variety. Dizziness, nausea and the big D are others. Different foods trigger different reactions. A slice of bread would send me into itching and chills within three to eight hours. Tropical fruits will cause big D in about 6-8 hours. The only thing that symprtoms have in common is the delayed reaction. For some people it is even longer than the times I have posted here. Claire

Ursa Major Collaborator

I just read (by following a link in another thread) that soy intolerance can cause the same symptoms as gluten intolerance (surprisingly, including flattening of the villi!). So, if you're eating soy and are intolerant to it, you can get 'glutening' symptoms, without eating gluten at all. Try eliminating soy from your diet (if you eat any) and see if it helps. Also, dairy can cause similar symptoms as well.

Guest cassidy

Just an update. I cut potatoes and chocolate out of my diet and my stomach pain is gone. Both of those are my favorite comfort foods, so I don't know if I ate them too often and developed a problem, or what is going on. I liked Simply Potatoes mashed potatoes and Baked Lays, both of which have chemicals I'm sure, and everything else I have been eating is more natural and organic, so I don't know if that is it. I made my husband mashed potatoes last night and licked the spoon - I couldn't get them out of my mouth fast enough - they tasted horrible to me.

I'm hoping it is chocolate and not potatoes because potatoes will be much harder to cut out. I'm going to wait a while and try things and see if I can figure out exactly what caused it.

My heart is still pounding every morning when I wake up. I get reflux easily when I eat food that doesn't agree with me. I know that can cause my heart to pound. It has happened twice in the doctors office, my pulse was very high, my blood pressure on the low side of normal. I"m hoping if I get all the things I'm allergic to out of my diet, that it will go away again. I think it started happening all the time when my morning stomach pain got bad. I know it isn't from low blood sugar, because hypoglycemia is something I have dealth with forever, and now know is a symptom I get from glutening. It doesn't feel like that.

mgglutenfree Newbie
Just an update. I cut potatoes and chocolate out of my diet and my stomach pain is gone. Both of those are my favorite comfort foods, so I don't know if I ate them too often and developed a problem, or what is going on. I liked Simply Potatoes mashed potatoes and Baked Lays, both of which have chemicals I'm sure, and everything else I have been eating is more natural and organic, so I don't know if that is it. I made my husband mashed potatoes last night and licked the spoon - I couldn't get them out of my mouth fast enough - they tasted horrible to me.

I'm hoping it is chocolate and not potatoes because potatoes will be much harder to cut out. I'm going to wait a while and try things and see if I can figure out exactly what caused it.

My heart is still pounding every morning when I wake up. I get reflux easily when I eat food that doesn't agree with me. I know that can cause my heart to pound. It has happened twice in the doctors office, my pulse was very high, my blood pressure on the low side of normal. I"m hoping if I get all the things I'm allergic to out of my diet, that it will go away again. I think it started happening all the time when my morning stomach pain got bad. I know it isn't from low blood sugar, because hypoglycemia is something I have dealth with forever, and now know is a symptom I get from glutening. It doesn't feel like that.

Hi Cassidy,

I think I goofed on my first reply. I have similar symptoms even after a year gluten-free, however, I think I am missing some subtle, insididious gluten in some products. When I have Baked Lays I feel ill, or having too much corn products, like tostitos or too much of anything with soy. This usually results in gas pain, nausea during the night, and GERD symptoms, and I will often have to get up and have a bm or tons of gas. It's lovely. I'd suggest you cut out the lays and make sure your chocolate is one of the gluten-free chocolates. My physician also suggested that the good bacteria balance can get out of wack sometimes after a major dietary change so we have discussed my going on "probiotics". I think that is what it is called. Has anyone tried that approach?

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.