48 replies to this topic

[mushroom]

That is a remarkable description, Carrie, of feeling like being underwater with no idea how to surface, drowning with no source of oxygen.... No wonder you were not "yourself". So glad that you accidentally discovered the source of your problems. I assume that it helped your son immeasurably too since it is pretty apparent that gluten does pass through the breastmilk. How is he doing now? Do any of your other chldren have problems?

[carriej82]

That is a remarkable description, Carrie, of feeling like being underwater with no idea how to surface, drowning with no source of oxygen.... No wonder you were not "yourself". So glad that you accidentally discovered the source of your problems. I assume that it helped your son immeasurably too since it is pretty apparent that gluten does pass through the breastmilk. How is he doing now? Do any of your other chldren have problems?

Mushroom, yes! Thank you. My son's skin does clear up dramatically when I manage to keep all dairy, gluten, and nut-derived products out of his diet. Unfortunately, he gets fed things by his older siblings quite often and even a small amount of one of his allergic foods will cause him to explode from head to toe in a very uncomfortable rash. It is just too bad that my favorite gluten free flour has both almond meal and buttermilk in it, which he can't tolerate, so back to the drawing board on finding a yummy gluten-free flour that does not taste like cardboard.

My other children do have issues that I now strongly suspect may be due to gluten. 3 year old son has had night terrors for years, angry/aggressive outbursts, difficulty controlling his bladder and elimination even though he's been potty training for months now and is almost 4 years old.

5 year old daughter has had belly aches and constipation since infancy, very fussy, vomits randomly for no reason with no accompanying symptoms, incredibly sensitive/cries all the time with an attitude of the-world-is-ending-I-want-to-die (since when do 5 year olds want to die?!), and the biggest thing is her irrational fears. They are crazy, she is petrified of everything from being alone, the dark, dogs, costumes of any kind, food ... she often cries at the table because she will look at her food and tell me there is something bad or yucky in it. She is also very thin, brittle hair (not like mine or my husband's which is thick & healthy, I always wondered about a vitamin deficiency) and dark circles under her eyes. I see in her a lot of my gluten-induced personality traits, which I also see in my mother who never was tested for celiac but now has hashimoto's disease. Also have a grandmother and great-grandmother with mental/pschizophrenia disorders so it seems this gluten intolerance is a genetic thing that is more evident in the females in our family.

[tanktank]

same problem... my friends and i call it "wheat anger", or "pws" (not pms) post wheat syndrome.

Here's how mine goes like clockwork... I get contaminated food, my stomach burns within 15-30 min then i get super tired, by the next day i barely can get out of bed i have joint pain, muscle pain, muscle weakness, my entire body hurts i get bad sinusitis headaches, my allergies go nuts my brain doesn't seem to function correctly, i have problems concentrating and remembering words i want to say...
as all the goes away and i start to feel better... about 3 days later i have super out of nowhere anger for no reason, everything and everyone pisses me off and i feel like i want to punch things, i don't want people around me, i feel closed in, i have anxiety and am jumpy. I just try to kinda joke it away with my boyfriend, he knows and understands whats up and i try really really hard not to be personally mean to him or anyone else. Then as fast as it comes it disappears 12-24 hours later out of nowhere and i am completely the opposite super happy, goofy and normal again.

I believe it is a total chemical reaction in my brain from the wheat. It is like this every single time i get glutened like clockwork.
I had anxiety all my life, depression, paranoia, i worried all the time, had phobias, and panic attacks. After I took gluten out of my diet ALL of these mental problems disappeared like magic...It was as if I was an entirely new person with less limits and new found mental stability with NO medications ONLY no wheat!

I joined this forum specifically to quote this because it is EXACTLY like me (other than the boyfriend cause I'm a guy lol). I was just staggered how similar it is and how thankful I was to find this.

[JoeBlow]

I just came across this thread, which has been going a long time. I have the problem, too, and it's obviously hereditary, in both my parents and their relatives. Some of you have not gotten any relief from the gluten-free diet. I get the anger when glutened, but for me, there is something else that keeps it going longer, and causes the problem by itself. My doctor is an MD practicing for many years, who is a nutritionist, who has been gluten-free for more than 20 years. This is what my doctor told me, and diagnosed me with: I have pyroluria, an inability to convert typical dietary and supplementary vitamin B6 (pyroxidine HCL) to the usable form of B6 (pyroxidol 5'-phosphate), which is a necessary enzyme in the utilization of the vitamins and minerals that a celiac typically is deficient in. So, I got a double whammy of malnutrition. My doctor's prescription for P5P and zinc citrate worked for me.

[mushroom]

I just came across this thread, which has been going a long time. I have the problem, too, and it's obviously hereditary, in both my parents and their relatives. Some of you have not gotten any relief from the gluten-free diet. I get the anger when glutened, but there is something else that keeps it going longer, and causes the problem by itself. It is an inability to convert typical dietary and supplementary vitamin B6 (pyroxidine HCL) to the usable form of B6 (pyroxidol 5'-phosphate), which is a necessary enzyme in the utilization of the vitamins and minerals that a celiac typically is deficient in. So, we can get a double whammy of malnutrition. Look up pyroluria. If you have a long second toe (as long as your big toe or longer), known as the royal toe, celtic toe, Morton's toe, etc., you are susceptible. One symptom is poor dream recall. If you get diagnosed with this, you need to take P5P (pyroxidol 5'-phosphate), and extra zinc, and avoid regular B6 supplementation, which you may find in a lot of your supplements. Or just trial it with a 50 mg tablet of P5P in the morning for 5 days. See if you start recalling dreams and mellowing out. HTH.

If you have some research validation for some of these assertions, that would be helpful to our posters.

[GlutenFreeAustinite]

Funnily enough, I'm on a gluten challenge this month, and I've noticed more irritability than normal. I've been on gluten for about three days, and my stomach hurts like normal, but I'm snapping at people easily. I do have an Irish Yankee temper, but I'm normally not this bad.

[pricklypear1971]

I just came across this thread, which has been going a long time. I have the problem, too, and it's obviously hereditary, in both my parents and their relatives. Some of you have not gotten any relief from the gluten-free diet. I get the anger when glutened, but there is something else that keeps it going longer, and causes the problem by itself. It is an inability to convert typical dietary and supplementary vitamin B6 (pyroxidine HCL) to the usable form of B6 (pyroxidol 5'-phosphate), which is a necessary enzyme in the utilization of the vitamins and minerals that a celiac typically is deficient in. So, we can get a double whammy of malnutrition. Look up pyroluria. If you have a long second toe (as long as your big toe or longer), known as the royal toe, celtic toe, Morton's toe, etc., you are susceptible. One symptom is poor dream recall. If you get diagnosed with this, you need to take P5P (pyroxidol 5'-phosphate), and extra zinc, and avoid regular B6 supplementation, which you may find in a lot of your supplements. Or just trial it with a 50 mg tablet of P5P in the morning for 5 days. See if you start recalling dreams and mellowing out. HTH.

Morton's toe.

I've heard of this toe trait in my family....

And we are related to...Mortons.

Haven't heard about the nasty temper, though. Interesting.

[JoeBlow]

If you have some research validation for some of these assertions, that would be helpful to our posters.

This comes from the work of Dr. Carl C. Pfeiffer Ph.D., M.D. I edited my post, indicating this is what my primary care MD told me. I apologize. Here is a link to a discussion, but this is not where I got my information:
http://neurotalk.psychcentral.com/thread30724.html

Also:
http://www.raysahelian.com/pyridoxal5phophatep5p.html

This explains it best, but you may not find that you can accept this source:
http://www.primalbody-primalmind.com/?p=398

[IrishHeart]

I have pyroluria, an inability to convert typical dietary and supplementary vitamin B6 (pyroxidine HCL) to the usable form of B6 (pyroxidol 5'-phosphate)

The sources you cited are:

--a forum thread discussion (but you say it is not where you got your information?)
--as site that sells vitamins and supplements
--a blog

and she ends with:

"NOTE: It’s important that a clear laboratory diagnosis is determined before attempting high dose supplementation with zinc and/or B6. Working closely with a qualified health care provider knowledgeable about this condition is strongly suggested."

I did see this article by the doctor you mention in my research, but wonder if it can be found anywhere? The site says there is no known link. Too bad, might be interesting.

Pfeiffer CC. (1984) Schizophrenia and wheat gluten enteropathy. Biol Psychiatry. Mar;19(3):279-80. (No known electronic link)

[dazzammm]

just found this on google and reading with interest.

on doctors advice ive been on a elimination diet and tried gluten for the first time for 6 weeks the other day (i crumbled when i found some choccy digestives)

immediatley i had stomach cramps but had a buzz ive not had for a while. the next day i was irritable and angry. i could tell because im venting my spleen on forums and face book and had a rant at my son for no real reason, which i was not doing during the 6 weeks when gluten-free.

ill try being gluten-free again and see what happens.

[Marie1976]

My two cents: I have a horrible temper lately. And depression and anxiety. I don't know if I am accidentally eating gluten, I'm really careful. It feels like pms, except it's every day.

[ker0pi]

Wow, I'm amazed at how many threads I read where I'm left thinking "It's not just ME."

Irrational anger has departed along with my gluten habit and I could not be more relieved.

[Mom-of-Two]

Is it normal to take longer to be rid of these symptoms, if they are indeed due to gluten? I have been gluten free 5 months now, at my 3 month follow up my labs were drastically down, I have been very diligant.

My biggest issues are related to irritability and stress. Overwhelmed and anxious easily, mood changes, etc which I was hoping would be gone by now. I feel like it is systemic, like I have no control over when my moods will change. I also have such lack of motivation many days. I think I need to exercise regularly, something I plan to begin implementing.

Yes, my vitamin levels have been checked, low in folate and a bit on iron, both of which I take daily.

[Raining Skittles]

I'm go glad I found this thread. I just joined this forum and yesterday posted about how I get irritable beyond description (like PMS on steroids) after eating gluten. I feel like I have just been validated.

I was glutened over the weekend and have been fighting with my partner now for the past three days (not normal for us).
It was like we were both just angry and taking it out on each other. I can feel my anger lifting finally as of this morning and now I just feel sad because we were arguing over stupid stuff.

I think we both have issues related to gluten but my partner has decided to try eating gluten again.
That and my accidental consumption of gluten over the weekend just put us both over the top at the same time, in my opinion, as neither of us were arguing rationally.

So, I'm fairly new to being gluten-free, but looking back on my life and what I've eaten over the years, I can tell that whenever I ate a lot of gluten, I felt really out of it.

The cycle for me seems to be:
1) eat gluten
2) abdominal pain within minutes
3) nausea on and off within an hour
4) abdominal distension and increased pain within 3 hrs lasting about 24 hours
5) diarrhea for the next 12-24 hours
6) mood swings and anger after 12-24 hrs lasting about 2 days
7) depression after 48-72 hrs
8) start feeling like myself again after about 72 hours

[BBQ_BEE]

My 7 year old son was diagnosed with Celiac Disease this past year. Other than stomach aches, his behavior was the other major indicator that something was wrong. His teachers thought he had ADHA and Oppositional Defiant Disorder. They asked us to get him tested to confirm what they were seeing. He was also depressed, and very angry. One day, we were driving on the highway and he was upset with us. He was threatening to jump out of the car. He was starting fights everyday at recess. I think the principal had me on speed dial. He went from being a sweet and loving kid, to this monster that we didn't recognize. When I'd put him in time out, he would destroy his room. He could not concentrate at school. If we tried to sit down and do some homework, he would cry and scream the whole time. He was just not capable of doing the work in his state.

Once we had the blood test results from the specialist, she wanted us to keep him on gluten until his biopsy took place which was 6 weeks away. I tried to get the test moved up several times, but they couldn't fit us in. His behavior became so scary, I took him off gluten 4 weeks before the biopsy. The biopsy still showed damage to the upper intestine.

I want to share this with other parents because we went through hell trying to determine what his diagnosis was. His whole personality changed - anger, depression, defiant...

Every time he get's "glutened," we see the behaviors return, and they last about 3 weeks.

Now that he is off gluten, we have our son back.

BBQ