Mack's Mom--Gluten Withdrawal Here, Too!

[sue1234]

Ugghhh! I started gluten-free 4 days ago, and I feel awful! Julie, I know you said you felt awful a while back when you gave up gluten also. I have been having more hypoglycemia and just feeling weak. I'm eating good food, so it's not like I've change the type of diet I'm on, just the gluten part. I have read that there is such a thing as withdrawal from gluten due to its opioid(?) effect. My brain is so not working. I don't even feel like being on the computer, and that is so not me! I'm trying to hang in there, knowing that there is an end to this foggy tunnel. I want to feel like everyone else that says they feel the best they've ever felt when they gave up gluten.

And, when I reach that point, then I'll see IF gluten has influenced my POTS in any way. Since I don't tolerate meds, I figured this would be something I could actually do to see what the results are. That is, if I can muddle through these awful symptoms!!

If anyone that is not familiar with gluten withdrawal, many places claim that gluten from wheat and casein from milk have gluteomorphins and caseomorphins(spelling?) that act like opioids in our brain. That's what makes it so addicting, and I'm really feeling that that thinking is 100% correct. I want to feel the fog lift!

[Dizzysillyak]

Hi Sue,

I read once that Doctors of autistic kids tell parents not to withdraw gluten and casein from their kids diets too quickly. Sorry i didn't get to tell Mack's mom that ... I was under the weather back then ...

So maybe you should eat a little gluten ... Not a lot but enough to see if that's what's going on. Make it something you realy really want too ... .. I didn't know about gluten withdrawals when I was going through this in 2005. I just felt horrible 24/7 so it didn't matter. The first day gf I stopped feeling like I was buzzing and within 1 week my narcolepsy was gone tho ...

I had to do this when I was withdrawing from caffeine. On day 10, no less, i was so shakey that I thought I was going to have a seizure. A few bites of chocolate and it stopped ... i went back to zero caffeine the next day.

I had to back up on withdrawing from Klonopin too but eventually got off of it ... it took me 4 months ..

Hope you feel better soon .. d

[sue1234]

Thanks, Dizzy! The only plus so far is my abdominal bloating is gone. I've had it leave before for short periods, so if I make a whole month without bloating, I'll know it was the cause.

[Dizzysillyak]

Oh kewl .. Between feeling like poo and this, sounds like you're going to feel better gf. : )

[juliegee]

So sorry, Sue. I still don't know what to make of my GF trial

I found Dizzy's post about autistic kids not going cold turkey GF interesting as autism is loosely connected with mast cell disorders... Might be something to that. I also found recent postings about LDN (low dose nexatrone) interesting, how it gives the body an extra dose of endorphins- sort of sounds like what GF is doing for us???

My GI symptoms were unbearable, but the autonomic stuff (fainting while sitting ) is what made me give it up. I plan to discuss with my allergist and GI soon.

Feel better. If you stick with it, you are a better woman than I

Julie

[sue1234]

I had made the connection between LDN acting like how gluten affects people, too. That's what kind of made me go ahead and see if I can do this and see a difference.

BTW, I think if I was fainting sitting down, I would quit too until I found out why! I apparently am griping but not having severe symptoms as you were!

[Dizzysillyak]

I just googled gluten withdrawal autism and found some very heartwarming stories .. I'm sure you'll

find the info on going slow there. I think it was the doctor who wrote Healing the 4 A's that I got that idea from originally.

Hi julie,

You had it rougher than me too .. except that my digestion was horrible too. It was sooo painful.

It's late but I'm trying to figure out why you'd faint from going gf. Altho .. I had some weird gluten symptoms. I'm 99% sure that I had gluten ataxia which caused me to fall over when I tried to do the rhomberg (standing test for ataxia). It was with me everyday for 16 1\2 years and then disappeared out if the blue 1 year post gf. Odd neuro problems are normal for gluten intolerance tho.

I was just thinking if gluten can cause problems in our brains, it could affect this too. I wonder the

doctor who discovered gluten ataxia would know why.

G nite .. D

[sue1234]

I failed the Romberg last year when I saw my first neuro. I had no clue that I would! I should have had a clue when, when I shower and rinse my face, I close my eyes to get under the water and I know that I cannot do that for more than a second or two. If I stay that way too long, I'm having to put my hands on the shower walls to steady me. I won't know if it is gluten ataxia for quite a while, but I'm interested to know.

[Dizzysillyak]

Dr. hadjivassliou tells his patients to expect their gluten ataxia to resolve in one year. He specifically

tells them to be strict about their diets. I didn't know that much about gluten cross contamination

in the beginning so I spent 9 months with loose bms .. It's funny now ..

I mention ths because some others I've met who had gluten ataxia healed quicker than me. It took me

a solid year and happened without any warning signs. I just stopped fallng over ..

Do your arms get weak easily and does your vision get funky when you try to walk ? Mine did and that went

away shortlyafter my ataxia. Within days or weeks ..

Dr H explains that can be part of gluten ataxia too.

There is a digestive enzyme called dpp-iv that may help you too. It breaks down gluten and will help rid your

Body of gluten if taken on an empty stomach. I like glutenzyme by country life but you may prefer

enzymedica's or a different one.

Sorry I didn't think of this sooner .. I'm officially resigning as gf diet advisor because I suck ..

I use it and of couse I can't say for sure that it works because I don't know when or if I've been gluttened, But I

really think it helps. It's controversial but I've read about others who say the same.

I sure hope this works for you both ... Tc .. D

[sue1234]

OH YES! My vision is really weird when I walk! I've tried explaining it once to a doctor, and then I quit because it sounds to weird and very hard to explain. To me, it is like my vision is like looking through a bouncy camcorder. With every step, the "world" moves around too much.

Nice to know it may go away. I was relating it to POTS, but now I'll see if it is from gluten.

[Dizzysillyak]

Exactly .. Dr h called this ocular ataxia. I would be walking thru the interior of the mall and would

see the benches floating .. I could stop and refocus but then when I started walking it happened again.

That was on top of falling into anyone or any walls next to me. I sure don't miss that .. : )

My ataxia is why I used a motorized cart but for 16 1\2 years I blamed it in me/cfs fatigue .. I was

so angry at my doctors when this went away ..

I later figured out that hypoglycemia played a role in vision problems for me too. If my vision was fuzzy it was due to eating foods with too many carbs or foods with a high glycemic index. The paleo diet helped this .. This wasn't the same as ocular ataxia. Nothing floats ..

I'm fine now unless I get glutened or my glucose is messed up.

[Dizzysillyak]

I couldn't wash my short thin hair without putting my arms down 2 - 3 times because they

would go limp .. I don't miss that either..

Just wanted to make sure you saw the dpp-iv info. When I started looking at this in 2006, there

was uproar in the celiac community because they didn't want celiacs thinking this would

Replace the gf diet. Of course, the manufacturers said that but that was totally ignored by critics.

Some celiacs are old school and closed minded to this.

I started taking it when I went out to eat to avoid cc, but now have decided to take it everyday regardless. Dpp-iv is used in many ways by our bodies .. I think I read that a lack of dpp-iv is a given in anyone with gluten intolerance but I can.t remember where right now.

[L4UR3N]

I definitely had withdraw symptoms when going off of gluten! I thought it was really strange because I seemed to actually be worse off than before, but then I thought about drug addicts and what they go through in withdraw. Food is a drug--it influences chemical and hormonal processes in our bodies, so it would make sense that one could go through withdraw. Mine lasted only about 2 weeks and then I felt back to "normal" with my POTS. I have been gluten free for over 2 years now, and while my antibody levels have come down to an acceptable range, I dont feel any better unfortunately .

Recently I have learned that gluten is also found in rice and corn, so I plan to eliminate these from my diet, along with casein which is structurally similar to gluten. An awesome website I found was www.grainfreeliving.com. It has some very interesting information on it

[Darlene]

is celiac easy to diagnose? i thought about going on a gluten free diet, but don't think its something i should do unless i am gluten intolerant. what is a good blood test to test for celiac and it accurate? or it it like lyme disease and mast cell, difficult to diagnose?

[Dizzysillyak]

Hi rissy,

It looks like you have more intolerances than just gluten. I've seen this happen many times now.

We get told that gluten is causing our health problems when in fact, other foods are too.

I get frustrated thinking about how I wasted 2 years learning all about the gfcf lifestyle, when I

needed to be on the paleo diet.

Those of us with multiple food intolerances appear to have leaky gut aka gut permeability which is

harder to treat .. This Can lead to dysbiosis, nutritional deficiencies, etc.

Do you have an integrative doctor to help you with this ?

The gluten in other grains isn't the same as what's found in wheat, rye and barley so it's not

included in the gf diet. But many of us who tried the gf diet figure out that all grains and legumes

are making us ill. I just don't feel well after eating those whereas I get energy from paleo foods.

Tc .. D

[Dizzysillyak]

Hi northern,

The gluten free 101 section at www.glutenfreeandbeyond.org will hopefully answer all of

your questions. If not, the moderators there are experts on all things gluten and can help.

If you do decide to post a question, just be patient on getting answers. I'm a member over there

too and the board is slow now.

I expect it's because the gf 101 section is well written.

Tc .. D

[GingerA]

Julie,

Are you keeping some carbs in your diet? I am gluten free but I can't go carb free or I have symptoms like you described.

[Serbo]

took a break from strict paleo following some gasteoparesis (lost just under a stone), now eating Paleo and gluten free cakes to put some weight on.

ate sugary gluten free cakes/biscuits for 4 days, put on 4.5 lb, and my skin has gone horrible and low BP much worse, I think it's all the sugar, additives and vegetable oils that do as much harm as the gluten!

Been fun eating gluten free cakes now, got a sugar addiction again, amazing how powerful that stuff is!

[Dizzysillyak]

Too funny serbo .. I can soo relate to this. I'm ok on the paleo diet until I cheat then

the cravings roll in ..

How about eating more healthy fats for weight gain. I have to do this myself or I start

dropping weight. Raw nuts and seeds , olives, avocados and extra healthy oils

on your food would help.

Tc .. X

[Dizzysillyak]

Hi ... Just wanted to let you know that I'll be offline probably thru the holidays. I have company coming ..

If u have any questions, the people at gfab or celiac dot com can probably answer them ..

Have a great holiday .. D

[juliegee]

Hi All-

Been MIA as my MIL just passed away. We have two out of state affairs, a funeral this weekend in MI- just returned- & a burial in FL next weekend. My sweet husband is hanging in.

I'm back to my normal low-gluten diet, but while I was GF, I DID keep carbs in my diet with brown rice. I think I fainted because my limited blood supply was shunted to my belly dealing with whatever craziness was going on there- incredible pain, very slow motility. I waited 3 months to see my GI, but now have to cancel an appt. this week because of my out-of-town travels. I was hoping to be definitively tested so I could try GF again. I hope they don't make me wait another THREE months.

My extreme reaction was VERY telling. i want to try again, but will be officially tested first. Regardless of results, I will try again & plan to encourage my son to do the same. THANKS for all of the info!

[potsmomma]

Hi Julie, I'm really sorry to hear about your mother-in-law. I hope you are all hanging in there. I know stress can do a number on our symptoms.

My son has celiac and was diagnosed at 2 years old...crazy high antibody levels and GI damage. When I took him off gluten he would stand in the kitchen and cry and say he was hungry for days. He was eating constantly but never satisfied. It was heartbreaking. I would go in his room at night and the room would stink and I would think he had a dirty diaper but he was actually covered in sweat and his sweat stunk like poop. This went on for several weeks, it was truly like he was detoxing. Finally after about a month things turned around. He has gained about 5 pounds in the last six months and is a very different child with so much more energy and enthusiasm!

I was tested but was negative - both antibodies and scopes. I am trying GF now myself to see if it makes a difference. My mast cell meds aren't helping my GI/slow motility issues yet. Have you tried Gastrocom? I wonder if that would help you? I hope to try that or Ketotifen next.