Awol cast iron stomach

Oh goodness- me. Yes, Yes, Yes as poster above said these are symptoms many of us had as kids. I lived in state of constipation that was suppose to be" just me" "normal". I finally found out what normal is over 38 years later.  2 weeks after starting a gluten-free diet I began to feel "normal" is. It was night and day. Oh the memories are never ending and sometimes the anger. Nausea, dizziness, constant light headedness etc. decades long. Now I know its called brain fog. I have vivid memories of throwing up long spaghetti noodles whole and undigested in my middle school years. 

"In hindsight, I'm pretty irritated that the doctors always blew off my concerns, or "prescribed" Maalox and sent us on our way" I understand completely I was given ex lax,  Metamucil, Miralax changed based on decade. My husband just reminded me I have to let all the past wrongs go. I am still angry. 

I am glad they tested her. As Cycling lady said consider her Celiac despite the "mild".  I was misdiagnosed IBS for decades, I am currently labeled NCGS, but I got CC in early July (fish from trusted store) and here I sit with DH still. (Now you see why I am so angry at this moment and time- yes I get DH and GI symptoms and then some.  DH has a mind of it's own. I have no idea why DH didn't show up during my challenge, but alas regardless of my various labels. My body has made it very clear not to eat gluten.

I am glad you got her the help she needs. It's ok to be angry. Let those feelings flow tears, journal, whatever you need. Her GI tract with healing and in time will be more "normal" than she ever knew. 

Best wishes. 

The website or something on my end is failing and I am unable to reply

If you remove gluten from the diet and reintroduce it and you are sensitive it is likely you will notice symptoms when it's  reintroduced. Fatigue is common and you are fortunate not to have more symptoms. You would consistently have fatigue after consuming  gluten. 

 While you were eating it regularly you were consistently inflamed and your body was manifesting regular exposure as a rash. You may not even know all your symptoms until you are off gluten entirely and this includes what we refer to as cross contamination.

In my opinion , If you are sensitive, are off gluten (strict like a celiac) including avoiding cross contamination for a significant amount of time then reintroduce full on gluten your body will let you know in no uncertain terms. 

If you want to imbibe overseas and you state you don't believe it's celiac then you know what you want. If you do so and you show further symptoms heed the homeo path's hunch and Karen's advice to get a celiac panel and screening for NCGS when you get back after consistently eating gluten.

However my question is did the rash go away or begin to fade (less pronounced) after you went gluten-free after homeopath told you are sensitive?  If it did, then take note of  it it returns once gluten is a regular in the diet .

K respect Karen as a veteran on the forum she is very knowledgeable\helpful. However as ideal as gold standard diagnosis is not all of us achieve that status. I spent 20 plus years misdiagnosed and often found more help from alternative non western Dr than I did with western MD's. I have known something was wrong since she 5 and all went down hill in my 20's, worse in 30's, downright terrifying in my 40's misdiagnosed.

I read- you want to go overseas and enjoy a gluten containing diet. 

If you come back and decide to be tested and need us we on the forum will be here when you return if you need us.

I don't get dry eyes, but one of my many symptoms include eye pain. I would not describe it as the socket to me it feels as if I have inflammation \pain  inside the eye within pupil that extends into the back of the eye to the head. I've never figured out if it is tissue or nerve based, but definitely inflammation based. I can see the whole time no loss of vision etc. Just pain. I don't think it's an eye migraine, but tend to think it's nerve based. 

I hope it passes for you soon. Not fun.

On 7/20/2018 at 1:07 PM, KEllis said:

I see this string is several years old but I had to comment because I too have had serious issues with GMO food - mostly soy oil - which is in everything. I know that in the past Monsanto has been a beast to conquer but just recently a case against them was allowed by a judge in San Francisco. It is regarding Roundup Weed Killer (which is made by Monsanto) causing cancer in people who have used it to kill weeds but I think that it too could have adverse effects on our food. I try to always eat organic but something that I have mostly narrowed down to soy oil in all types of foods causes my body to repeal the food (it literally crawls back up my throat in a mass of mucus) but I think it is also a GMO issue and now that I have learned about what is going on with Roundup, perhaps that as well. It is so hard to tell with food! I think a lawsuit could be possible for Monsanto food related issues now that all this has come out about Roundup Weed Killer issues - and is in trial as I write. I am all for a class action lawsuit. Respond to me if you are interested as well. If there are even 100 people interested, we could have something. 

Not sure in addition to the cancer lawsuit case if you saw Monsanto was sold to a German company. I wanted to let you know as you may have missed the story. I am not in law, but I don't think the new owner could be held responsible for the damage caused by the former owner. 

I believe the cancer lawsuit you're referring to was filed before the sale. It would be info people may want going forward regarding Monsanto regardless of health issue i.e. Cancer, celiac etc.

You are incredibly strong and supportive for him. He needs it. 

I may also add his brain may not be working well quite yet to take all this in. This illness can effect us on physical, psychological, and spiritual levels. He may be in denial for now. Also he may not feel up to processing all aspects at once sometime its a gradual process. He may have some mixed emotions about living this new lifestyle thrust upon him. Many of us formerly "loved " the enemy that ills us.

hit the health problems brought up by Ennis first. remind him you love him regardless of this diagnosis and still plan to have a future as husband and wife. That did not change just modified by a new lifestyle.

It is likely your husband's other issues flourished or gained a foot hold even if it can't be clearly considered causative. likely later a connection will be found inflammation based health conditions. I was misdiagnosed for 20 plus years as IBS so it often haunts me that at different junctions in life besides then I was missed when I sought help. A lot of those pieces are explained now.

This is a bit manipulative of me to say, but use the kids as a will to live or to follow the lifestyle.  A bit low I  know, but I know on my hardest days after diagnosis and sleeping for what seemed like 2 years  straight through the symptoms,pain, and withdrawal etc the idea\responsibility to my children I likely passed this on to made me face another day. I still use it now on myself in my bad days.

Lastly, there is self blame, anger, denial, grief you name it that rears its ugly head. be there for him best you can, but ultimately I hate to admit this it's the celiac job to accept and embrace this lifestyle and illness. It will come possibly begrudgingly and for me with sentence enhancers?

He will. I am optimistic. He does need to heal that brain and many other things. People don't know how messed up an inflamed brain can be and cause issues\thoughts\behaviors . Keep cooking gluten-free get that inflammation out of his body for its a crucial first step.

Good luck

5 hours ago, kareng said:

I assume you will get the kids tested on their next doctor's visit?  

I second this. Are the kids still on gluten?

Forgive me 

I see you answered this.

i have cc brain this week

19 hours ago, squirmingitch said:

I thought salicylates might be part of my problem at one time so I ate salicylate free (besides being gluten-free) for a long time & it made no difference what so ever. That does not mean you don't have a problem with them but my gut is telling me that is not your problem.

I see you're in the midwest ---you must be pretty hot right now; I understand you guys are getting a heat wave. How is your humidity? Heat combined with humidity has been known to aggravate my rash. How about stress? You know stress can do it. Maybe it is heat rash???? 

Trout --- was this a steelhead? A salt water fish? Or a fresh water trout? If salt, then is it possible the iodine triggered the rash?

Have you been on any steroids lately? Taking NSAID's? Any new meds at all?

Lastly, yes, I think it's possible the trout could have been cc'd depending on how it was handled. If that's the case, then I tend to think it was a complete fluke/freak happening & the odds of it happening again are astronomical. It would have had to have been a case of someone touching something gluten & then turning around & touching the trout......or the ice the trout was laying on?????? I don't know your store so just trying to envision the set up they have there. 

Thank for your follow up info. As many of you know from past posts I'm currently labeled NCGS, but long suspect I'm celiac . My past rashes run the gamet of eczema, shingles, and puppp which I now realize were all likely DH. No one ever biopsied . I'd get  a cream and be sent on my way. The DH did not reveal itself during my incomplete gluten challenge. Go figure.

Thank you for informing me the heat humidity can bring on the flare. I did not know that. You are correct It is very humid and hot right now. No new meds. I am amazed how many lifetime issues now are revealed as celiac.

I was able to get into the accupuncturist/ chiropractor today( lucky for me she's ironically a celiac) . She also mentioned it's likely both cc and weather like you, and could see the flare.

I tremored all over her table arms, neck , head involuntarily which only gluten of all my food intolerances causes tremors for me , usually 30-45 min after , but did not occur until the needles were in this go round. 

So I guess sometimes a cc can cause symptoms etc and DH to present differently? I hope to keep the fluke cc to minimum.

Great detective work you appear to be assessing the situation correctly. thanks for reassuring me that it is a fluke that the fish is cc, but possible this rare time. It is the only new thing we can trace it to. It appears you are absolutely correct. As I don't think the iodine would create tremors for me.

The DH picked a new spot to rash, welt, bumps etc. I get red in this location my entire lifetime with no one ever realizing it was a gluten response. Elbows , waist, and back itched last night my usual spots , but didn't flare. 

I'll keep at it, but was completely surprised it flared in a new area for me and I didn't want to think I got cc, but apparently did. So for now we won't but that particular item again.

all signs point to it having been a combo of actual gluten cc exposure exacerbated by weather.

Has anyone gotten a DH flare from hot weather or from trout? Read in some former forums trigger could be salicylates. I was not aware that was on my immune systems radar, but here I sit day 6 of flare . Ironically my elbows are clear, but my chest and buttocks flared. I normally flare gluten wise on elbows, buttocks, head, and lower torso. The chest is ? painfully burning and insanely itching including welts and spots as my elbows use to. 

I have been eating at home, no new products, the trout was new as my daughter asked to try more types of fish to our homemade menu. Husband bought at store whole with head on and all. My Gi has been off as well. 

Trying to determine if fish exposed to cc, I now have developed salicylate issue, or can hot weathered trigger DH  ? My husband says it might just be heat rash (not everything goes back to gluten/ NCGS) 

However  the lack of sleep and the amount of discomfit is way too familiar. This is a usual spot to turn red within 30 minutes of gluten or corn exposure, but this first time full on flare occurred here with welts etc not just intense red flush.

Any guidance would help. I'm trying the witch hazel, shea butter and currently slathered in zinc oxide and wearing plugging tank top /keeping clothes off it but miserable. As I saw those suggestions posted in past posts. Can salicylate develop after gluten free if never revealed itself before? Needless to say no more trout for me. Only seafood / fish I knew I had issues with prior was scallops and Immunologist cautioned me to cod from skin test but was not IgE mediated allergy.

community let me know as I have worked painstakingly since oct 2016 to be vigilant and this is a sad set back.

thanks 

As Ennis says I get all 3. Before I went gluten-free I would have numb toes and my whole left arm would go numb. My whole arm would be numb and sometimes I would get a simultaneously shooting nerve pain in the other side/ nerve pathway. Once you finish the challenge you can focus on the advice Ennis gave to support your body. My stories of symptoms like yours and more could take up minutes of your reading time ?

Best to ask the Dr they likely will ask you to finish the challenge. I knew I couldn't do a 12 week and told them from the start . I agreed to a 2 week challenge for a both scopes top to bottom.  I had your symptoms and additional ones and did not finish the full 2 week challenge. I have a gold standard celiac cousin.

As of now I am NCGS and additional intolerances,but will not be surprised (if they ever complete testing technology to determine celiac without a challenge) to learn I am celiac. Regardless I can't eat it and in my two years since I joined the forums it was revealed both my children are intolerant as well. 

Good luck on the challenge. It's only my two cents but once the challenge is done and scope complete you may consider dropping gluten. I went gluten-free a few years before I was diagnosed , desperate to stop all my symptoms, but admit since I wasn't formally diagnosed and had not joined this forum , I was doing it incorrectly and consuming trace amounts that still caused issues in gluten-free processed foods etc. My sensitivity level / multiple intolerances is best whole food based. I also learned I had additional intolerances as well that damages me as well.

yes you sound similar to me symptom wise. I was diagnosed IBS for over 20 years with vitamin D deficiency. The Scope reveled IBS is not the problem and I went gluten-free , dropped corn and milk and I stay on top of vitamin d and magnesium.

Best wishes 

Oh no-

 Ennis d and all the nerve tweaks / twitching/ numbness

my sympathies I barely have those symptoms in my rear view mirror now

good call on ditching that hand blender 

sometimes once that switch gets flipped even just cc it feels unrelenting . 

Imho you probably have been so careful that the 15 ppm is just a no go even if below 20 ppm

you healthy otherwise no viral or other issues stressing your system?

then that hemp canister go bye bye and likely no repeat even if Nima says below 20 and at 15 ppm

Ennis' immune system dictates all

In my thoughts and prayers

stay hydrated if you can , if I don't everything is worse 

Keep us posted and rest if you can 

Definitely a family history of autoimmunity spectrum Jane to give the DR' s many IBS are missed celiacs. 20 years ago I was told based on symptoms only you have IBS and have to figure what you can and  can't eat. Only later to read many celiacs were formerly diagnosed IBS. My scopes ruled out IBS.

Based on family history you should be suspect imho

On ‎12‎/‎5‎/‎2017 at 4:57 PM, Jane87 said:

Thanks to everybody that has taken the time to read and reply to me on this thread!

One "symtpom" I forgot to mention is one that I've only noticed in the last year. I was reminded as it happened tonight when I got home from work. I was hungry but considering I'd had a filling breakfast, a late lunch and a snack only about 60/90 minutes earlier, I was disproportionately starving to the point of feeling very shakey and feint. Not enough to go all Victorian period drama over it but I had a sweaty back and felt ravenous. I didn't stop feeling hungry until well after I'd eaten. Lucky for me the other half was already home from work and dinner was on the go. I've had a few of these episodes this year. They make me think of low blood sugar but I don't believe myself to be diabetic. Any thoughts on this guys? I'm not undereating and certainly not underweight!

I got this symptom a lot when young and particularly in my 20's I would forget to eat. Perhaps it was all the celiac bloating

My mom would notice my arm/hand shaking and say go eat something. When I first went gluten-free (the first time) I had to eat small snacks every 2 hours. As JMG said my blood sugar would dip and although not extreme enough for my body to react.

Lastly, I have to be careful about CC as well one time coffee gave me tremors.  My husband grabbing and holding my hand did not stop the tremor. The Celiac Immuno Dr told my husband get a new coffee pot, and grind only fresh whole beans, give it to her black. No tremors. I can not do processed coffee apparently there can be some CC - even if low a count my body detects.

Good luck small meals-carrots are a great go to /purse snack.

On ‎12‎/‎5‎/‎2017 at 6:15 PM, Victoria1234 said:

Subscribe to your post for notifications. Looks like 6 people have done so!

That's logical- lol . I should learn to do that

Awol, was it the elbows that you suffered with or did you have rashes anywhere else? How was getting diagnosed for you?

sorry not sure why my email is not updating properly. I got this late?

i did not get notification until I signed in my apologizes in my delayed follow up.

my DH has not been diagnosed. Ironically it was not present during my oct 2016 time period. I had it on and off over the years different spots mostly elbows, bum, face. My last flare was after visiting a friend  it appeared slightly above my knuckle on way home in car and I thought err her soap must have had gluten in  or I must have touched something with gluten on it. I found I had a tiny cut on that hand. I actually wash my hands prior to leaving people's homes and then when I get home. So either her soap or door knob or something got me. 

I get a burning like sensation then intense itching a slight color change pink of the area before the actual bump erupts. 

My diagnosis has been a long time coming. We are hard to diagnose as my cousin is gold standard celiac diagnosed and it took her 2 years, and over a dozen Dr.'s and what sounds like horrible stress.

I was diagnosed IBS for 20 years before I got sent to a celiac clinic. my worst DH flare was horrendous after the delivery of my daughter it was diagnosed by observation as PUPPP , but after joining here and seeing pictures I am thinking that was a missed opportunity. I say to my husband either all those celiacs have PUPPP or my PUPPP is DH?

I have taken a long road and numerous times sought help for my celiac issues, but was never tested for celiac until 2016. I had time periods of traipsing to Dr usually every decade two major years were in the my 1996 & 2008 were two time periods I really sought help. By 2008 I got so frustrated they began to look at me as nuts and it's in your head bit. I stopped going to Dr and my husband was the first person to "diagnose me". I truly see it as my husband diagnosed me and my cousins diagnose and my 2016 celiac gluten challenge /clinic confirmed it.

My cousin was much more persistent and stubbornly said you figure this out. She made the rounds of every and all Dr to get her answer.

I usually went to gp, allergist/immunologist, then dermatologist, then I was essentially  led to believe it was in my head. I was already gluten-free by the time I got to a celiac clinc but crawled there after a waitress fed me gluten despite calling ahead ya da ya da

now I am a hermit at home but know for sure what I finally am

edit: I did a challenge I could not complete with dual scopes endow and colon

my prior diagnosis were not found no IBS , IgE mediated wheat allergy etc ruled out.

it was more a rule out to then clarity ruled in with me 

they told me avoid gluten , you have Barrett's esophagus and gastritis later records indicated NCGS is in my records now not IBS

my husband and I believe I am celiac but I was unable and unwilling to complete the full challenge which would be needed to be celiac

my symptoms are extreme and I still have not recovered 

??

39 minutes ago, Victoria1234 said:

I had no clue. Derm tested it and said it was dh.... and didn't tell me a thing about celiac. jMG was the first person to tell me that it was a celiac diagnosis!

Oh my! Glad JMG told you 

I also get funky eye pain it has been a year. I get a migraine throbbing  like eye pain and then sometimes a more achy pressure like pain I believe is inflammation. 

It comes and goes this past 14 mos post challenge. So I concur it can come and go even if you are strictly gluten-free.

I hope it is less prevalent once more healing occurs.

despite not active flare DH I can get insanely itchy and pain in my DH areas even if it doesn't erupt visibly on skin.

Deja Vu 

your description and photo look similar to my past experience

thank goodness that nurse was on the ball and got you on the right path. Keep that appointment

good luck

13 hours ago, Ennis_TX said:

Yeah it is called or refereed to as keto bread, I developed my own recipe for my bakery has less then 2gs of net carbs per slice. Cereal...yeah there are two I have seen one is essentially dried up keto bread with monk fruit sweetener cubed up. KNOWFOODS sells it, the other is a type of ketogenic granola type made by Julian Bakery. You can also make hot keto porridge by heating up almond flour, coconut flour or a combination of both in a nut based milk til it thickness up works better if you add and blend in some egg whites and keep stirring til it thickens I often do wiht one coconut flour, almond butter, nut milk, a egg white and sometimes I add in ground flax seed but that makes it super thick and goopy. Is my go to hot meal 2-3times a week for breakfast.

Thing is you make these with nut, and seed flours, egg whites, so there is little to any carbs, offset by high fiber, protein, and fats. Works wonders for managing your insulin lol.

Oooo I have to try that porridge we could use some variety around here for days I don't want to do a big spread, and the days my growing son has an insatiable appetite I struggle to keep the food coming. High fiber low carb yay!

On 11/27/2017 at 7:20 PM, Lucylou2013 said:

I am reacting to cellulose in all my meds...a horrendous journey and a lengthy one. After having my second compound script done in Vegie capsules I have found out the capsule is made with Hydroxypropylmethyl callulose as one of the ingredients. I have intense burning pain from neck to tailbone, peripheral neuropathy up to my knees, burning insides and diarrhea. Been off my meds for a month now trying to sort it, not fun. Waiting another 6 wks yet to see allergist. I am also gluten free and these symptoms are same as gluten.

Lucy Lou,

If it is a med you can not go without can you ask the pharmacist if you can open the capsule and remove the contents and adding to and taking it with applesauce, yogurt, pudding or some other food that is soft and you are tolerant to, to mask the taste. 

It may not taste pleasant but may get you around the cellulose issue. Depends on the level of sensitivity. If the cellulose is only in capsule it might work.

if that won't work:

Lastly, you can look into empty beef or fish gelatin based capsules. Some supplement companies sell them. Double check they are just pure beef or fish gelatin and they don't add additional agents. You then can maybe fill them with your own powder or bring them to a compounding pharmacist if you have one.

good luck

Never a bad idea to further read up on nutrition or consult with one if covered by insurance or in budget. 

While celiacs can have most foods except wheat, rye, barley some of us have additional intolerances too. Some have intolerances to lectin  foods or nightshade foods as well. Even if not intolerant sometimes when highly inflamed these items may push the inflammatory threshold. 

I know other posters mentioned some great ideas and additionally you may want to read up on AIP. You may have to remove things to quiet the inflammation (white noise) to find your triggering foods and calm the immune storm.

In my opinion some lectins or  nightshades can add to the immune threshold/ burden

good luck 

3 hours ago, Lucylou2013 said:

I am presently having multiple allergy reactions and had Thyroid script compounded to remove corn deritaves only to find I reacted for 4 days with top to toe chronic pain and stiffness, no sleep, a tailbone that was soooo painful I could hardly sit on and chronic restless irritable legs, body and mind, as I did when corn was in it. (I also react to gluten with the same symptoms but with 3 to 4 more days of diarrhea to follow). My Compound Chemist suspected I was reacting to microcrystalline cellulose and has now redone my Thyroid script again replacing it with rice. So far so good, no reaction as yet. I take 5 scripts and both corn and Microcrystaline cellulose are in them all. Its going to be an extremely expensive  ongoing exercise from now on. No PBS meds now, Pensioner or not.

Hi Lucy Lou,

I am very glad you were able to get your med compounded and figured out corn derivative compounds are causing you reactions. After my gluten challenge and the fall out that followed I determined I could not have corn derivatives microcrystalline cellulose, maltodextrin (corn), citric acid (corn derived) as well. My joints, gi, and then some react. I had to even remove White distilled vinegar derived from corn from my home as well. So even when something was gluten-free I often had to call to verify it was corn free , make my own, or go  without ex condiments, medicines, vitamins, etc. 

I am glad you figured it out.

Best wishes on healing.  

In addition to checking  products for gluten-free issues, the particular vitamin that supports hair and nails is called biotin. It is included in most multivitamin s, multi b complex vitamins, but if some people do get enough from diet they may need to add a single biotin supplement.

B vitamins are  water soluble so they are not stored by the body. When I get glutened and cc I lose hair, after my  challenge my hair suffered for quite sometime vs my gluten-free years. It takes times the cells are competing for limited nutrients in the commonly malabsorped nutrient celiac body. Good luck

Jmg sorry your unwell. 

Yikes, sounds like something got you. The Dr.  who diagnosed me said instant coffee and ground may cause issues. To rule out coffe itself was not a problem for me she told my husband to get whole beans grind at home and drink it black. I did not react. This sounds like you did all the right things.

It turned out it was the corn that got me outside the home if it is gluten-free. Many places use corn derived flavorings and that seemed to be what we figured out.

feel better.

Renee,

I just wanted to chime in my appreciation for your great question. I will find this helpful in the future as I am able to travel more. I have  only done small trips or rentals with a kitchen where I bring my own cooler, toaster, utensil and skillet 

happy travels and best wishes to your girls

Hi fbmb,

I thought of you on holiday weekend . As you see the celiac.com community came out in force to help you at this trying time. You found the right place to help get you to the right place. I hope you had good few days of improved mood. Most of all trust your gut will lead you. I've visited Whal' s site in past and 2 other autoimmune MDs who embrace dietary healing as posters above said. Nothing like an MD to juxtapose the "norm" "buck tradition" thinking of their industry. They have to be true believers from personal experience and passionate to go out on that limb!

 The food protocol experience speaks volumes to get back to basics food vs. Less technological pharma etc. Don't get me wrong they have their place just not for everything. Things former historical cultures did prior to any created stuff.

Well I hope all is looking up. Hope you checked out some books or website with lots of gluten-free food ideas. I batch freeze biweekly or monthly some pretty good smoothies that are great to toss in blender while I get the kids of to school. Some of the green  ones are a great to start with. Anti-inflammatory with veggie component, but with carefully selected fruits to balance out taste. Not bad and to boot easier to digest for you current state. Also the more you plan ahead the less stress and the easier it gets. 

Good luck