Reactions to gluten

psychc

Hi everyone,

Great to find a group that knows the challenge of being a Coeliac. I'm from Canberra Australia and am keen to hear others experiences in dealing with the disease. I'm curious to hear how other Coeliacs react when they ingest gluten.

When I compare my reaction with others, I tend to be at the extreme. As such, I would like to hear other peopls experiences.

My reaction, within about 20-30mins of ingesting gluten I become violently ill and vomit for about an hour. The more I ingest (accidently of course) the stronger the reaction. I once ate a greek dessert which has semolina which i totally forgot about and was down and out for about 12 hours....vomitting for about 2 and then headachey, tired, sweaty etc...

Anyways, look forward to sharing with you all (feel free to add me as a friend if you like!)
Psychc

ALH1981

i have severe digestive issues - terrible pains, cramps bloating or the opposite - lose everything! (sorry for so much information)

IN addtion, extreme fatigue and iron deficiency (from the malabsorbtion)

metisgirl

I have severe celiac disease along with the skin condition called Dermatitis Herpetiformis...I am so sensitive that eating out where there is any form of contamination whatsoever will make me ill and full of blisters....I also get very bad bleeding with intestines/ Even cosmetics, shampoos creams etc....that might have oats, barley, starches cause me to get sick and develop sores.....If I am out at relatives or friends homes, they have to cook my stuff away from other peoples foods....At home if i touch the normal bread for my kids I get sores and sick...That is how sensitive i am...If you want to chat just add me to your friends list....I am also very deficient in many vitamins do being celiac....

AllisonMart

First I will usually start coughing violently for no apparent reason, usually while I'm still eating whatever it is. Luckily this keeps me from ingesting any more of it. I have the digestive issues as well as crippling arthritis in my hands. The arthritis is what made me start investigating this, as I think I had the digestive problems since early teens and didn't realize it. Symptoms start within 20-30 minutes after eating gluten and can last for 2-3 days. Then extreme fatigue and anemia as someone else mentioned. It can take a week to recover from a bad gluten poisoning. The severity depends on how much of it I ate. Luckily I can count on one hand the number of times in 3 years I've been glutened!

mlb929

My two boys have totally different reactions. My oldest is more severe and gets reactive to less exposure. At Thanksgiving, the school exposed him and he got really bad flame red eczema four days later. A restaurant two days ago, made regular pizza instead of gluten free, he had two bites - this time is was leg cramps, stiff joints and neck, achey all over. He has also reacted with severe behavioral problems, vomiting, and bad stools. We never know what or how severe it will be.

My other child, gets constipated and a migraine headache.

Our MD has told me that each exposure takes 6 months to recover from. My oldest gets a very low drop in his white blood cells, and extreme decreased immunity from exposure that is the longest lasting effect. He also is severely anemic with extreme fatigue. We also monitor his inflammation levels as these increase with exposure as well.

G30Grrl

My reaction is not as severe as many, fortunately. I will have digestive troubles for a few days, but no vomiting. My eczema flares up and lasts for a couple of weeks. But the most immediate and unpleasant reaction is the severe fatigue (It's what made me begin the search that lead to discovering the gluten sensitivity), along with irritability and an inability to focus or concentrate well, which lasts for several days or more..

ALH1981

My reaction is not as severe as many, fortunately. I will have digestive troubles for a few days, but no vomiting. My eczema flares up and lasts for a couple of weeks. But the most immediate and unpleasant reaction is the severe fatigue (It's what made me begin the search that lead to discovering the gluten sensitivity), along with irritability and an inability to focus or concentrate well, which lasts for several days or more..

i get all of this too - would love to see some of the research you have done, or have you share the links?

LainMac

I have no reactions at all, so in a way, it is worse because I could be having regular gluten exposure and not know.

itsjustme77

I have pretty severe reactions... all the digestive issues, brain fog where I get really angry and over-emotional, and I fall a lot. My joints don't work and I end up on the floor, or I am just so exhausted that I can't go on.

stephabef

I usually deal with issues on the other end - severe diarrhea, cramping, bloating, etc. Sometimes vomiting.

The more severe issues, however, happened when I'd been eating gluten for a while. My villi could no longer take in vitamins, so I was suffering from neurological symptoms - confusion, dizziness, irritability, brain fog, etc.

My mom and uncle are non-symptomatic Celiacs, though. Lucky ducks!

hotpickles

I will get a skin rash, headache, digestive issues, brain fog, nausea, and a general feeling of "gross" (don't know how to better explain it). I feel like laying around all day, but that doesn't make me feel any better.

My sinuses also act up when I eat gluten.

jalara

Hi! I'm new to the group but thought I'd jump right in.

I have CD too, and my reactions are quite different. I have the GI distress (and you can see my stomach visibly bloat within minutes of exposure), I have the dermatitis, but I also have neurological manifestations.

I have a neuro condition that cause sporatic paralysis of various cranial nerves (accompanied by ridiculous pain) and exposure irritates the condition and cause the pain - and if left to continue will progress to paralysis onset (a minor episode, but still an exacerbation of the condition).

You should have seen how happy my neurologist was when he made the connection!

psychc

Wow thanks everyone for sharing your stories. I thought I was an extreme reactor, I've suddenly realize I have nothing on others! It certainly is an amazing disease.

It was comforting to read about brain fog... I know when my anemia is back because I become an airhead!

Look forward to hearing and sharing more with you all.

mamabear272

I have no reactions at all, so in a way, it is worse because I could be having regular gluten exposure and not know.

I would actually hate that! I know I would eat gluten as if I weren't sick! Just out of curiosity though, how did you find out you have it without symptoms. I know if I hadn't gotten sick and went to my GI doc where she tested for celiac, I would just still be sick. What reason did you have for testing?

My symptoms are mostly tummy related. Cramping, vomiting, D. I also get brain fog, dizzy spells and joint pain. There is a supplement that I get at vitamin stores that helps. It's called GlutenEase. It doesn't save our guts from damage if we get glutened but if you accidentally get CC'd, it helps with symptoms.

I'm anxiously awaiting the magic pill that will help us!! LOL

mlb929

I have no reactions at all, so in a way, it is worse because I could be having regular gluten exposure and not know.

I'm curious to know how you were determined to be gluten sensitive or intolerant with no reactions whatsoever?

jlepitzki

Finding all of this very interesting. I am in the process of being tested for Celiac disease. INitially the doctors thought it was my thyroid, but it came back normal. I have elevated liver enzymes, itchy skin, very fatigued, and IBS. Since eliminating gluten my belly bloat has gone way down, which is encouraging although I haven't noticed any improvement in my fatigue.

I am curious about those of you who say you are vomiting. I have always thought I was very succeptible to stomach viruses as I am throwing up quite frequently. I never knew it could be a reaction to gluten.

pdworkman

My symptoms:

Chronic Nosebleeds
Anemia
Depression/SAD/PMS
Reactions to antibiotics and medications
Other environmental allergies and food intolerances
Hyperparathyroid symptoms, including kidney stones, dry eyes, and chest pain - subclinical, not diagnosed
Unexplained infertility
Peripheral neuropathy
Migraines
Unexplained abdominal pain - hospitalized once, suspected gallbladder
Rashes
Constipation, gas, irritable bowel/spastic colon, other digestive issues
SIBO (Small Intestine Bowel Overgrowth, with ulcers, heartburn, acne rosacea)
Arthritis/joint pain
Low blood glucose, resulting in hypersensitivity to fructose
“foreign proteins in the blood” (a symptom of autoimmune disease) which triggers a false positive on HIV/Hep B testing and prevents me from donating blood
Hangnails, ridged nails
Dry mouth and eyes (possible Srogen's, another autoimmune disorder)

My son's symptoms: (he is adopted, but guess what, he got it too!)


Compromised immune system (repeated strep infections)
Behavioural issues, violence, mood, sensory
Diarrhea and constipation
Stomach aches/throws up if too much gluten
Dermatitis/eczema
Anxiety
Food allergies/intolerances
Migraines
Thin, flaking nails
Dry, thin hair
ADHD & learning disorders (some FASD or inherited, not gluten related)

Hubby's symptoms:

Irritable Bowel Syndrome
Pain in spine/tailbone
Muscle and joint pain

Dad's symptoms:

Failure to Thrive
Childhood dysentery
Tooth decay
Low energy, "weak heart"
Reactions to drugs/medications
Migraines
Depression
Multiple food allergies/intolerances
Kidney failure
Hypertension
Rapid weight loss
Allergic rhinitis
Muscle contractions
Malformed nails

Grandmother's and Great-grandmother's symptoms:
Weight loss
Migraines
Thyroid
Parkinson's
Osteoporosis/hump
Bread "upset her stomach"
Diabetes
Stunted growth
Impaired immune system
Pot belly
Allergic rhinitis


Pam

mamabear272

Oh gosh yes! It usually my main symptom! I was diagnosed with IBS for months too.

Wow Pam! That's a lot of people with celiac! Have you all been diagnosed? I'm lucky that none of my kids have it. I do think that my dad had it (it's hereditary).

Amayrial

If my exposure is light, my arms and upper torso break out in welts that look like chicken pox (dermatitis herpetiformis). This is can happen 20 min to a day later. If my exposure is bigger, say a drink or a solid meal, I can start vomiting within 10 - 20 min.

With both exposures, my joints start to seize up and I ache all over. I also am completely exhausted and end up sleeping as often as possible. If the exposure causes a flare with my Rhuematoid arthritis, I could be down a week or more.

I do my absolute best to avoid ALL gluten. If I even question an item I refuse to eat it.

pdworkman

My great-grandmother was diagnosed as being "allergic to bread". Of course, back then, that would have pretty much been her only exposure to gluten.

Grandmother was never diagnosed, but her symptoms were very classic, and we have suspected food issues for many years, until my dad finally went gluten free, and we put the last piece in the puzzle.

We put my son on a GFCF diet a few years ago, without really knowing much about celiac disease. He has a number of behavioural issues, learning disabilities, etc. and is adopted (I say that only to point out that he did not inherit any celiac genes from us!) He had always had digestive issues, right from a newborn, and they were getting worse. After every meal he was taking tums or pepto and laying doubled-up on the couch. I had been loathe to put him on GFCF, even though I hoped it would help with behavioural issues, since we were already vegetarian and I did not want to have to remove so many other foods from our diet. Most veggie burgers, etc. are made with gluten. We ended up having to take him off of corn as well, but once we removed those three things, gluten, dairy, and corn, he was finally able to eat without pain. He had his first breakfast in years without having a tummy ache afterwards. It may be that he is allergic to wheat rather than celiac, as his bmom listed "allergic to grass" on her medical form, and wheat and corn are from the grass family. But he now throws up when he gets glutened, so there is no way we would ever put him back on gluten to be properly tested.

Because of DS's issues, there was no way we could have anything in the house that he could not eat. He had no impulse control, and withdrawals from gluten were very difficult. He would sneak down into the basement with a can opener and eat cream of mushroom soup straight from the can. So hubby and I had no gluten while at home, but continued to have it if we were out somewhere without him. Then we started to see a pattern. Every time one of us ate gluten away from home, we would have problems. So that was it for me. Hubby continues to sneak gluten when he is stressed and out alone, and continues to suffer from it. There is lots of depression in his family, and I wonder how many of his family are sensitive to gluten. His grand-niece was diagnosed as being gluten intolerant, but his niece is also adopted, so it is not inherited from his gene pool.

My dad has known for years that he had food intolerances, but they seemed to be constantly changing. Looking over his personal history, he had classic celiac symptoms as a baby/child, but was diagnosed with dysentery rather than sprue. He was underweight, often sick, hospitalized for intractable diarrhea, when he went to school he would have to leave class to go have a nap because he couldn't make it through the day. When he finally decided to try going gluten-free (I had already been gf for two years, so I at least had a base of recipes for my mom) he had been losing weight and was skin and bones. He had constant migraines and depression. He had problems with blood pressure, and then kidney failure from the blood pressure meds. The first month that he was gf, he gained 15-20 pounds back. Undiagnosed, but never going back to gluten!

Pam

Oh gosh yes! It usually my main symptom! I was diagnosed with IBS for months too.

Wow Pam! That's a lot of people with celiac! Have you all been diagnosed? I'm lucky that none of my kids have it. I do think that my dad had it (it's hereditary).

ilookthetype

I throw up first, then I have extreme fatigue, followed by migraines and intense stomach/intestine pain (I once likened it to eating shards of glass tossed in arsenic), depression, my ADHD flairs, and as these symptoms improve my insomnia acts up. It's hellish. I am fairly certain I have Celiac simply because I have a severe reaction to even the tiniest trace of gluten, but I refuse to eat gluten for weeks/months to get the darn test done.

LainMac

I'm curious to know how you were determined to be gluten sensitive or intolerant with no reactions whatsoever?

Both my 17 year old son and I are celiacs and we found this out "by accident" this summer.

My son had a series of tests to find out why he wasn't growning. (I'm 5 3, his dad is 6 1, and he is barely 5 4).

His IGA blood test came back as 300 (where under 20 is normal). His 6 month marker after going GF is just below 9.

His gastro guy did DNA testing and son had extremely high DNA markers for celiac. It was recommended to his father and I that we get tested. On that same IGA test, I had a score of 152. Hubby is in the clear (for now anyway).

Son says his head feels "clearer" on the diet. As for myself, I just pass wind less. I read all the time how much "better" people feel on the diet, but for me, 5 months in, I have yet to feel the "GF magic". In fact, as I whined in another post, my reward for healing is to gain weight.

inkedartist

I have had more reactions now that I've been gluten free for a few months. But it's only bloating and cramping, and that's only if I eat something with gluten. Not contact sensitive, but I might have gotten to that point if I kept eating wheat.

I started looking into it because I just felt fatigue, tired, joints hurt, can't concentrate/ADD symptoms, bi-polar symptoms, constipation and weight gain. I was frustrated because I would have bouts of motivation to exercize, but I wouldn't loose weight. Then I would get depressed and loose myself in a fog.

As soon as I went gluten free I lost 15lbs within a month and feel like I can live again. My energy is back, I'm super quick with my school work , and just generally happy. It's like taking off a giant wet, wool blanket that I've been carrying around(metaphorically).

pdworkman

Have you tried omega 3 supplements for the bipolar symptoms? We've had remarkable success here.

Pam

I have had more reactions now that I've been gluten free for a few months. But it's only bloating and cramping, and that's only if I eat something with gluten. Not contact sensitive, but I might have gotten to that point if I kept eating wheat.

I started looking into it because I just felt fatigue, tired, joints hurt, can't concentrate/ADD symptoms, bi-polar symptoms, constipation and weight gain. I was frustrated because I would have bouts of motivation to exercize, but I wouldn't loose weight. Then I would get depressed and loose myself in a fog.

As soon as I went gluten free I lost 15lbs within a month and feel like I can live again. My energy is back, I'm super quick with my school work , and just generally happy. It's like taking off a giant wet, wool blanket that I've been carrying around(metaphorically).

tannity2

My reactions are pretty mild compared to most of you. I haven't been diagnosed with celiac, but I feel so much better after being gluten free for the last several months. My symptoms are: bloating, cramping, puffy face, anxiety, brain fog, fatigue, IBS, general BLAH feeling. I've had digestive problems all my life due to what I thought were allergies to soy, dairy, almonds, Brazil nuts. Now I'm beginning to wonder if eating gluten has helped to create those other allergies? Every once in a while, I'll break out in a rash -- but not every time I eat a suspect food. I've heard that some "gluten free" foods, if they're produced in a facility that processes wheat, etc., will cause a reaction.

So much to learn.

pdworkman

Yes, celiac creates a leaky gut, allowing larger molecules into your bloodstream than are supposed to be there. The body fights these invaders with histamines. Voila, allergy!

Pam

My reactions are pretty mild compared to most of you. I haven't been diagnosed with celiac, but I feel so much better after being gluten free for the last several months. My symptoms are: bloating, cramping, puffy face, anxiety, brain fog, fatigue, IBS, general BLAH feeling. I've had digestive problems all my life due to what I thought were allergies to soy, dairy, almonds, Brazil nuts. Now I'm beginning to wonder if eating gluten has helped to create those other allergies? Every once in a while, I'll break out in a rash -- but not every time I eat a suspect food. I've heard that some "gluten free" foods, if they're produced in a facility that processes wheat, etc., will cause a reaction.

So much to learn.

inkedartist

I haven't had any mood swings since being gluten free. I eat a lot of fish, so I don't take the supplements.

Have you tried omega 3 supplements for the bipolar symptoms? We've had remarkable success here.

Pam

tannity2

Yes, celiac creates a leaky gut, allowing larger molecules into your bloodstream than are supposed to be there. The body fights these invaders with histamines. Voila, allergy!

Pam



Maybe that's why I also have Hashimoto's, an autoimmune disease where the body attacks the thyroid? I'm learning that being gluten free helps my symptoms there, too.

tannity2

Oops! I put my reply within the quote box. (Still figuring out how MFP works).

pdworkman

Auto-immune diseases tend to run together. Once your immune system is on high alert, it is far more susceptible to hashimotos, diabetes, srogens, etc. those long-chain proteins like gluten, dairy, soy, corn, etc. seem to be real problems in a lot of these illnesses.

Pam

Maybe that's why I also have Hashimoto's, an autoimmune disease where the body attacks the thyroid? I'm learning that being gluten free helps my symptoms there, too.

tannity2

So helpful! Thanks, Pam