Reactions To Gluten

[tagger]

Hi everyone,

I'm new to this board. I'm wondering if anyone has noticed reactions to ingesting gluten other than the usual gastro problems. I find that I often become irritable and moody and sometimes get migraines. I don't know if all this is related or just coincidental. Does anyone else have an array of reactions?

Appreciate any info....thanks...tagger

[Rorginos7]

Interestingly enough I have found that with talking to many people, my friends reaction was fibromyalgia, my other friend has ms symptoms, my mom had fibromyalgia, low white blood cells count, moodiness, crying all the time behavior like the lows of bipolar almost, my daughter who is five has no gastro trouble except the bloated stomach, she has the rash on her backside when she gets contaminated, she will cry for no reason once i found her standing in the corner crying and she didnt know why, she also wets the bed when she is contaminated and is hyperactive into everything all the time. I really feel as though the symptoms can vary and you dont have to have the classic symptoms of gi tract trouble and diarrhea to have celiacs. Soyes your symptoms can very much be related to gluten. hope this helps you. Renee

[Lily]

There are so many symptoms, but of course everyone is different. I have lots of joint pain, huge mood swings (I'll feel happy one minute and the next like I could cry my eyes out for no reason). When the contamination is at it's worst, I get terrible migraines and can't function. I have acid reflux when my duodenum swells up, it pushes on my ribs and gives me back pain as well. Not to mention the normal bloating, gassiness, diarrhea and sometimes constipation. I also have trouble swallowing like there is a lump in my throat. I wake up many mornings like I have a hangover, however I don't drink! Hope this helps you

Lily

[seeking-wholeness]

I get three-day migraines occasionally, too, with contamination. I got a really interesting headache yesterday at dinner, when I ate a contaminated vegetable stir-fry mix (there were two identical mixes on the shelf, except one had noodles added--they must use the same machinery to package them!). Before I was done eating, my stomach started to ache, and it felt like the pain in my head was originating in my stomach (sort of like a "cold food headache" when you eat too much ice cream at once or swallow a whole ice cube). The stomachache and headache went away at the same time, too--about half an hour later! I was so surprised! Mild heartburn lingered, though, and this morning I had all the usual GI symptoms and sore "pressure points" (which usually wait to hit me until first thing the next day, for some reason).

Mood swings are sometimes my first clue to an accident. (I can't believe I used to live in a constant state of near-suicidal depression! The gluten-free diet is wonderful!) My 3.5-year-old son gets them, too (and hyperactive and uncooperative), and the baby gets really irritable and can't stay asleep--so you can imagine the interplay that goes on after we ALL eat the same contaminated meal!!!

I get acne on my face and back (and on my back it ITCHES periodically), and the amount of creamy-white "fur" on my tongue increases (because my ability to absorb the nutrients in my food decreases, according to my naturopath). I would also be totally unsurprised to discover that my endometriosis-related pelvic pain is/was also gluten-related. Right now I am still in lactational amenorrhea 17 months after my second child was born, and I am wondering if this, too, is a side effect of celiac disease!

It's really amazing that gluten can find so many ways to mess up our lives!

--Sarah

[mannabbe]

Tagger, when I have an accidental gluten ingestion I will be on the verge of tears for about 24 hours. I would have just thought I was crazy (or overly emotional), but the woman who sits next to me at work, and who is also celiac, has the EXACT same reaction. I get die-o-rea as well, but the short term depression is so much more debilitating. I also get major brain-fog.

Laurie

[jenni]

DH welts! "They" say the welts are itchy...mine burn.

[Roz]

Only to lend comfort and support to fellow celiac warriors, here is how my mind-body reacts to a microscopic (or larger) ingestion of wheat, rye or barley gluten:

stomach ache and elimination problems for 1-7 days; followed by various headaches, confusion, audio/visual hallucinations for 1-2 weeks; followed by 1-2 months of skin eruptions that itch and have little tips that break off. Then, it's over and I am completely normal and feel great (until the next mishap). I feel like I'm the Alice who fell down the bunny hole. I try to maintain a "rising sun" attitude toward life and direct myself away from "setting sun" thoughts. Finally, from experience, a severe lack of B6 will cause crying for no good reason. And, if you

[hapi2bgf]

I've been gluten-free for a little over three months now. When I eat something wrong by accident, I get extremely irritable to put it politely plus I get the diarrhea and abdominal issues. The real problem is I think I react to touching Gluten. I have had skin splits that bleed and are slow to heal on my hands and feet all of my life, but since going gluten-free only one hand breaks open and bleeds anymore. I only touch Glutens for my childs meals (extremely picky eater). Does anyone else get these skin splits? I think the technical name is fissions?

[mannabbe]

Roz, your response to gluten is so intense. and long-lived. Alice indeed! What are the audio visual hallucinations like? I hadn't heard about a link between the emotional response (crying!) and B6. I'm on massive and complex nutritional supplements, including B12 shots - - and have been for almost 3 years. So I don't think that's it for me - although it may be for some people.

One doctor friend of mine said that gluten, for many people, just messes with brain functioning in very complicated ways. The recent article about increased depression among celiacs is a documented example. For me, I think that short term depression is just one of my many responses to gluten. I consider myself to still be in a recovery phase, as I have many other food allergies in addition to gluten; perhaps I'll be lucky and this particular syptom will diminish over time...

Laurie

[Guest shar4]

Wow!! I didn't realize how varied the responses were to this condition. I have only been diagnosed for 2 months, but seem to be surviving well. I was extatic to learn that it was not cancer. I had known for years that something was wrong, but no one could seem to find out what it was. I had been anemic for years, just thought that that's the way I was . I went to a new Doctor and she was the one who finally investigated, and sure enough, I have celiac disease.

My problem is that I seem to be floundering with snack ideas, since I had nearly lived on pretzels for years.

Thankfully, family is supportive, and my husband even reads labels on the foods already. ( Sorry to be so long-winded, but it's nice to know that others understand).

Sharon

[lucycampell55]

I like shar4 seem to be surviving well. I was just diagnosed the second of Nov. 03

I had major weight gain over a 3 year period and my most major symptom was depression and anxiety that no one could find a reason for also it seemed that no matter what I ate I kept indigestion. I too loved pretzels and just about lived on them, and snacks are my major hurtle. I have not had a major problem with most of the things I can no longer have. I just can't seem to find anything that I can have when I just want to pick.

My husband has been wonderful. He reads every label and won't eat anything that I can't have when he is with me. I don't know how I would make it if he didn't show so much support.

Lucy

[Lily]

I have also had major weight gain, with no apparent reasons. My eyes don't work right sometimes and I can't walk upstairs without getting out of breath. I always feel like I have bronchitis too. No one wanted to diagnose me with celiac because of my weight, they thought all celiacs were very thin with just a large bloated stomach. It really helps to find others out there and realize I'm not crazy . The brain fog and depression seem to be ruling my life. I'm just starting gluten free, but I know when I am contaminted instantly because my heart pounds and my pulse quickens very noticeably.........the first few times I thought maybe I was having a heart attack, yikes.

Lily

[tonileet]

Good Day,

Roz - Yes, "skin eruptions that itch and have little tips that break off"!

And Jenni - mine burn as well as itch.

This happened to me for the first (and so far only) time 5 months after going gluten-free. I'm still wondering if it was DH.

I found a celiac.com article by Dr. Joseph Murray about DH which says, "The condition is related to the deposit under the skin of IgA deposits. These occur in response to the ingestion of gluten in the diet. However, once deposited there, they are only slowly cleared by the body even when the individual is gluten-free." He also says that "It is unusual to develop DH after the start of a GFD for celiac disease. About 5% of celiac disease patients will develop DH, usually in the first 6-12 months. This probably reflects the long-lasting nature of the deposits under the skin."

I think that's what was going on with me. I think that my body is finally getting the message that I'm serious about not consuming any more gluten and so my IgA deposits are literally itching to leave! It's part of the detoxification process, or so it seems.

What a learning process celiac disease is, eh? My thoughts are with you all. Hang in there and listen closely to your body and heart. The answers are there. I remind myself of this everyday. We can, and will, heal ourselves. Take care - Toni

P.S. Roz - I also occasionally have mini gluten nightmares! In my last one, I ate a bite of bagel and immediately dreaded the mouth ulcers I knew would erupt within 2 or 3 days. I couldn't believe that I had let myself do that. It felt so real. It took a few minutes to convince myself that it really was a dream. What a relief!

[RJARED]

I feel your pain. My reactions include: bloated abdomen, fluid retention that collects under the skin over my abdomen - dimply. I'm on the thin side, so it's pretty noticeable. Either diarrhea or constipation + a 2-3 lb weight gain for 3 days, probably due to fluid retention. I also get bladder infection-like pain that is relieved by taking a fluid pill. Headaches, migraines, shimmery pools in my field of vision, joint pain, charlie-horse pains in the legs, depression, anziety, waking up for hours in the middle of the night. Hyperactivity and lack of impulse control. I say nasty things I normally wouldn't say. Impatient!!! The first 24 hrs are not bad. 24-48 hrs after eating gluten are the worst. 48-72 hrs later, I'm starting to feel human again. Low blood pressure, and all-over body chills, even in the summer. Used to have little bumps on the front of my lower legs andthe tops of my hands, before going gluten-free. That's gone, now. Been gluten-free for 3 yrs. 52 yrs old. Had diarrhea as a child. Constipation as an adolescent and young adult. Never really had diarrhea much as an adult - so it's not a good indicator, as many doctors think. Life is great now - unless I get into gluten by accident.

[midnightjewel40]

if i have gluten by mistake i get emotional i have migraines and feel quite ill and get diarea (the runs) and the pain well lets not talk about that i try to aviod it but sometimes it just happens my motto is "if in doubt leave it out"

i also get depressed too and then i have to rack my brains (what i have left)

to see what i ate and when it was

can be a pain

hope this helps

jacque

[foxyfire24]

Like every one else who has posted. I too get severe migrane's that last a few days after ingesting gluten by mistake. I also get flu like symptoms that last 2 or 3 days. I have a question tho. Has anyone ever had a problem with eating Mc Donalds frys? Over the weekend i was at Mc D's and ate some fry's and within half an hour I had a really bad migrane. I also felt faint and the back of my neck went all tense. I was hugging the porcelain god for 7 hours. If it wasent coming out one end it was the other. I thought we could eat the fry's at Mc D's?? Anyone else had this problem??

Danielle

[Guest LisaB]

Danielle,

I was looking up food related items on the old board and ran across this and remembered your question here, this is what was written:

On another post earlier in the year, McDonalds food was one of the topics. Someone posted that McDonalds now coat their FFs with a coating that contains gluten. I remember thinking "I'm glad I haven't been eating at Mcdonalds." Another person mentioned that a lot of times they stick their Hamburgers on buns in the microwave to heat them up so be sure you don't get one of those. Is their hamburger meat pure meat? or does it have additives?

Then:

Meanwhile, here are the details of our French fry production in the U.S. A small amount of beef flavoring is added during potato processing - at the plant. After the potatoes are washed and steam-peeled, they are cut, blanched, dried, par-fried, and frozen. It is during the par-frying process at the plant that the natural flavoring is used. These fries are then shipped to our U.S. restaurants. Our French fries are cooked in vegetable oil at our restaurants.

McDonald's 1990 switch to vegetable oil in the U.S. as our standard cooking oil was made for nutritional reasons, to offer customers a cholesterol-free menu item. This nutrition announcement received national media coverage, widely broadcasting the facts about our switch and why we made it.

If you go to their ingredient list on FFs it says "TBHQ and Citric Acid added to help preserve freshness" they do not disclose where the citric acid is from.

Sounds like there is a reason those bothered you!

Lisa

[foxyfire24]

Lisa,

Thank You so much! It sounds like there was a reson for being so sick. Im still feeling the effects Even tho I live In Canada i dont think there would be a big diffrence in the food process. So im pritty sure that what you mentioned is very much correct. I will definatly go to the Mc D's web site here in Canada just to double check. Thank you for the info!

Danielle

[seeking-wholeness]

Thank you, Danielle--you just made me laugh out loud! I really needed it, too; today's being rather rough. I had never heard the phrase "hugging the porcelain god" before, and for some reason I just find it hilarious!

--Sarah

[ROYAL BLUE]

hi everyone. I have a question but first I'll give a brief history... My son has been gluten-free for about 2 months now. He does not get sick to his stomach when he eats Gluten ( to my knowledge). Anyway, the first week being gluten-free, his stools were firm and for the first time ever, did not have a fowl odor. I got excited at the thought that this way of eating is working, (would that change in just a week?) Well now his BM's are back to the way they have always been. Does this mean he is getting gluten from somewhere? I've read about this lactose intolerance on this board, would the symptoms of that be the same? I hope not, he is such a picky eater, he lives of f of yogurt, cheese sandwiches etc.

Any advise would be appreciated

Tracy

[Connie R-E]

This is a list Mariann compiled a while back from the old board...I loved it! (Hope you don't mind I'm re-posting it!)

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

Obesity

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Colic

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

Connie

[Guest shar4]

Ok, I guess you could say that I'm slow to learn, but the last 2 days have been killers for me. I seem to be gaining weight at an alarming rate, but what is annoying me is that I never seemed to have any overt symptoms before I was diagnosed, but now, I think, when I have something that I shouldn't, the inside of my mouth gets sores in it. It has happened 2 days in a row now, and I must be getting into something that has contamination, or I am missing something on the lables.

Anyway, learn as we go, I guess.

thanks for all the input from everyone,

sharon

[aldociao]

I have had skin splits that bleed and are slow to heal on my hands and feet all of my life, but since going gluten-free only one hand breaks open and bleeds anymore.... Does anyone else get these skin splits? I think the technical name is fissions?

hapi2bgf

I have had these splits on my fingers for years, before the celiac disease (self dx'ed), and have not been able to find out what causes them. They come and go, but usually I have them during the wintertime, and usually on my thumbs and index fingers. I thought that interesting so did some reading about what meridians (from the Chinese and Indian viewpoints) are said to be involved. According to one source, the thumb relates to the brain meridian and the index finger to the lungs. Neither seems to be that connected to the intestines to be reacting to intestinal damage, but who knows. And if someone knows more about the meridian connections and can throw some light on this mystery, it would be appreciated. (Good to hear that there is a proper name for these things: fissions. I will try to search it out.)--Aldo

[tagger]

Thanks for all the input. It's nice to know that I'm not the only one. I do suffer from migraines and wonder if they are gluten related. Also have been chronically depressed on and off over the years. I was a childhood celiac but back then they thought you grew out of it. It wasn't until I became REALLY sick 2 yrs ago that I clued in to the Celiac thing. Both of my brothers were also childhood celiacs but won;t admit it. My mother also I think. My maternal grandfather died of colon cancer. I'm the only one who is on a gluten free diet (I try anyway). I worry about all these family members who won't face up to facts. Mom also has had problems with depression etc (and of course the usual gastro).

Another question. I seem to have trouble taking vit B. I get very jittery, like I've been drinking heavy duty caffeine. Are there any other ways to ingest B6 that won't cause these side effects? Does anyone else have problems taking vit B?

Thanks Tagger

[judy04]

Hi everyone....Today stated out pretty well, my husband and I stopped at

Wendy's for a quick lunch. We both had chili and a plain baked potato.

45 minutes later I knew I was in trouble, I started to get a bad taste in my

mouth and by the time we got home I had to "crash" becuse I had slight pain in

my right side, but unbearable pain in my back which was relieved by tylenol

and my standby heating pad. This has been my first accidental ingestion that I

know of since going gluten-free in Nov 03.If this had occurred last summer I would have had spots in my eyes, burning in my eyes, and a major gastrointestinal "event"

either nausea and especially diarrhea. So,in someways I am better than before, but I know I won't eat Wendy's chili again!!....The bad taste is alway's a signal

that my body doesn't like what I ingested.

Judy