Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

"Super Sensitive" Celiacs.....


jerseyangel

Recommended Posts

jvosicky Newbie

"On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 477
  • Created
  • Last Reply
mayfaire Newbie
"On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.

I am also sensitive to all those things and more. Learning about all of this is fairly new to me. I have had the strangest symptoms that range from a sudden outbreak of intensly itchy hives (from eating blue corn)to dry mouth/eyes, nerve pain and it has left me feeling like my body is foreign to me in how it feels and reacts. Something I read said that it took years for the damage (flattening of villa in intestines, causing mal-absorption of nutrients) to occur so the cure will take awhile but to be hopeful because the intestines are very long (size of tennis court if laid out?) and healing will come.

I sometimes despair when I think of my old life just a few short months ago when I thought I was reasonable healthy and didn't plan my meals, but looking back I see that what I thought was healthy wasn't that great and the symptoms I attibuted to meno-pause were in fact gluten sensitivity.

mayfaire Newbie
Thank you for the ideas, GFinDC, I've been making my own chicken broth but am too sensitive to eat legumes right now, my sister mentioned quinoa also, I will give it a try.

It is a relief to read some of the experiences in here, it sounds so much like my own experience--I try to explain what is going on with me to my family but it really baffles most of them.

Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Lisa Mentor
Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Try cooking your quinoa in chicken broth. I use HerbOx bouillon granules. I found it quite good, with a tad of butter.

Gentleheart Enthusiast
Hello Gentleheart, I'll betcha if you give them a call, they would consider a small special run for you and leave out the cornstarch. I could be wrong. They seemed like really nice folks. If you don't feel like calling them, let me know. I will call. All the best, Mike

Thanks, Mike. You're very nice. :)

I will consider doing that when I get done with the SCD I'm currently trying.

Crystal Brown Rookie
"On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? "

Thank you for posting. At least I know I am not alone on this very frustrating and isolating journey. I swear people think I am on fad diets when I tell them that I cannot eat gluten, dairy, soy or corn!

I just do not understand why my body has become so sensitive? It is frustrating without an answer.

I'm sensitive to dairy, soy, sugars (not sure which ones, I'll say all of them for now), corn, nuts, bananas and apples. =P

The nuts cause me to break out with mouth sores (peanuts to almonds, doesn't matter).

The bananas cause HORRIBLE cramping and D.

Apples give me migraines.

Sugar, I think, does some very odd things including cramping, D and C. I'm still not sure if it is sugar or soy lechitin.. Oh! I also get rashes under my eyes with too much sugar.

Soy... cramping and C, then D.

Dairy.. gas, cramping, cold and flu type symptoms.

WOW! I sound like a mess! :/

And of course gluten.. I'm not sure if this one is common, but I was cleaning out something that had wheat flour in it and my hands literally started turning red and burning... Is that possible??

Allergy Sue Newbie

Hey,

I am new to this board but I am not knew to problems with eating gluten foods. I have always had pain, congestion, depression, anxiety, and flu like symptoms when I ingest gluten or dairy. But after going to many different physicians I did not have any answers. A friend of mine took me with her to an alternative health doctor. So, I made an appointment to see the doctor. Took tests and found out a lot of my problems are due to eating gluten and dairy, and prepackaged foods with dyes, preservatives, etc., in them.

With a family that do not believe that foods can cause these problems I am the odd one out sometimes. But I am learning to eat gluten free. And learning to make meals that are nutritious and that my family will not suspect do not have the offending wheat and dairy in them. Making gluten free, dairy free meals was hard for me at first.

I am glad I found this thread this evening. Thanks for starting this thread again. Allergy Sue

I was thinking it would be nice to have a thread where we can kick ideas around that work for us, as well as share our frustrations with others who understand.

My original thread on the subject was inadvertantly lost, but there was so much interest that I'd like to try again. :D

After being gluten-free for a good three and a half years, I find myself just as sensitive--if not more--than I was when I started. My reactions have gotten less severe, but they tend to drag on a lot longer. One thing that has improved greatly is the anxiety. Before I was diagnosed, I had full on panic attacks. I've not had a panic attack since going on the diet, and the near-crippling anxiety is all but gone after taking about 18 months to begin to improve.

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



num1habsfan Rising Star

Well I have discovered this week that thanks to some extreme stress and being super upset, it was enough to trigger Celiac off---along with a major migraine that's lasted me for the last 5 days. Definitely worse than a headache. Headaches do not make me sensitive to light.

Now tonight, for some WEIRD reason, something inside of me snapped. I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat. But it's bad enough that I swear, if I see someone eating pizza at the university tomorrow, I'll cry. There's no doubt about it!

mushroom Proficient
Well I have discovered this week that thanks to some extreme stress and being super upset, it was enough to trigger Celiac off---along with a major migraine that's lasted me for the last 5 days. Definitely worse than a headache. Headaches do not make me sensitive to light.

Now tonight, for some WEIRD reason, something inside of me snapped. I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat. But it's bad enough that I swear, if I see someone eating pizza at the university tomorrow, I'll cry. There's no doubt about it!

Oh you poor dear! I have not experienced the gluten craving, but best to take an extra big hanky with you tomorrow :)

num1habsfan Rising Star
Oh you poor dear! I have not experienced the gluten craving, but best to take an extra big hanky with you tomorrow :)

Thank you...like I said, this is the first time in a longgg time I've had gluten-filled cravings. Someone said the word "blizzard" and I thought of the icecream treats, and then they said the word "flakes" and I thought of cereal. That's how bad it is! I'm afraid of buying coffee in the morning, ahhh! When I see donuts or other goodies...

GFinDC Veteran
Tried the quinoa and the taste put me off, ugh, but my intestines loved it.

Sorry to hear that Mayfaire! I see on this link that they recommend rinsing it first before cooking. Seems there is a coating on the outside that can have a bad flavor. I haven't noticed it myself, but maybe the kind you bought had more need of rinsing than mine. They also say the red kind has a better flavor, although I've only done the white kind myself.

Anyhow if your gut is happy why do you need to be happy too? Picky picky...:D

Open Original Shared Link

GFinDC Veteran
Hi everyone,

I'm new here and wanted to thank you for this thread. I'm just beginning my journey in discovering and accepting the level of my gluten intollerance. I've been severly lactose intollerant for over 20 years and have had issues with gluten for the past few years. They've gotten worse and it's time for me to get serious about avoiding it. Been feeling very bloated the last couple of weeks and have trouble sleeping.

Looking forward to learning more and getting tips from everyone.

-Dee

Hi Dee, (CampingGirl08),

Your story sounds sorts like mine. I was lactose intolerant for many years before I found out my real problem was gluten. I have a hard time sleeping if I eat dairy. Stick around, there is plenty to learn here.

Mother of Jibril Enthusiast
I'm not sure if this one is common, but I was cleaning out something that had wheat flour in it and my hands literally started turning red and burning... Is that possible??

YES... totally possible, and it sounds like a true allergic reaction (IgE). Some people have celiac disease AND a wheat allergy :blink:

When I get hives on my arms or face it looks splotchy, but my hands just turn solid red.

lizard00 Enthusiast
I was sitting on the bus and saw a guy in front of me eating a sandwich, and since then my brain is thinking "Oh-my-god, I want gluten!" I have noooo idea why. I have not craved gluten in ages, and I'm not about to cheat.

You know, I don't usually crave gluten either. But, I've recently found out I'm pregnant, and this one has been much harder than the first, as far as nausea and such. I'm hungry, but I find that recently I've been craving pizza and chick fil a sandwiches (which I stopped eating LOOOOONNG before I went gluten-free), and the thought of veggies that I normally love are a total turn off.

They're too different circumstances, but I feel your frustration. That's when the completely logical side of you has to kick in and know what the repercussions will be if you cave. Hopefully, it will pass quickly for you. (and me!)

mayfaire Newbie

Anyhow if your gut is happy why do you need to be happy too? Picky picky...:D

Thanks for the chuckle. I did rinse it, but maybe not enough. It smelled so good while cooking, reminded me of okra, anyway my gut says "ahhhh".

Someone also told me papaya is a good stomach tranquilizer, so when I am able to find it that feels soothing too.

oceangirl Collaborator

Hi Sensitives,

Sorry to change the subject and I know this should probably go on the "foods" section, but, since this is a super-sensitive thread I'm going to ask. Veterans, particularly, could you tell me your absolute trusted canned tuna w/o SOY and, preferably without preservatives as well?

Thank you so much!

jerseyangel Proficient

I can't help you with that one, Lisa--I don't eat tuna. Don't really know why, since I like it..... :unsure: Just haven't had it in a long time.

Well, I'll see if you get any answers and maybe try a tuna sandwich again sometime with lots of chopped celery and lettuce :D

ravenwoodglass Mentor
Hi Sensitives,

Sorry to change the subject and I know this should probably go on the "foods" section, but, since this is a super-sensitive thread I'm going to ask. Veterans, particularly, could you tell me your absolute trusted canned tuna w/o SOY and, preferably without preservatives as well?

Thank you so much!

Starkist makes one, the only I have found other than the one I get at Wegmans.

From their website:

Open Original Shared Link

Gourmet Choice

jerseyangel Proficient

Thanks Ravenwood--I'm making a note of that. :)

MaryJones2 Enthusiast

Trader Joe's Albacore Tuna is also soy-free. It's just tuna and water. I eat it all the time and have never had a problem. It's one of the dozen or so processed foods I can eat.

oceangirl Collaborator

Thanks, Patti and Ravenwood and all!

Ravenwood, I will look for that.

Hope everyone is feeling well...

lisa

  • 2 weeks later...
Sailing Girl Apprentice

Hello fellow super-sensitives,

Anyone know of a completely safe cocoa powder? Even the one sold on celiac.com (Shiloh's) is processed on shared lines. I want to make chocolate ice cream (with coconut milk), but need some cocoa powder. Any help would be much appreciated!

jerseyangel Proficient

Hi Sailing girl :)

I just use Nestle's Pure Cocoa Powder. Never a problem with it.

Swansong Newbie

I've been gluten free since July 08, and although initially I began to improve immediately, some of my symptoms have not gone away... primarily trouble with my bowels and fatigue.

I understand you can get cross contamination from using glutenized utensils, but I've done all I can do to keep that from happening. I'm starting to believe I am highly sensitive, and react even from touching wheat products. I make my husband's lunch every day... you guessed it, a sandwich. So I'm wondering if just touching the bread could be the culprit. Any thoughts?

I'm still feeling way better than I did when I was first diagnosed... back then, I couldn't eat anything or get out of bed for more than a few minutes at a time... but I was hoping by now that the emergency trips to the bathroom would have stopped. (it always happens when I get in the car to go anywhere... grrrrr!)

But at least, I no longer have the horrible pressure in my gut, or the severe heartburn and acid reflux. Anyway, like the rest of you, I'm just trying to learn to live with this thing and live a good life.

oceangirl Collaborator

Swansong,

My thought is it may not be from touching the bread but simply from the fact that (it sounds like) you do not have a gluten-free home. I think many supersensitives will agree that until there house was "safe" mysterious glutenings continued. I know that was true for me and I am VERY careful, cook almost all my own food, never eat out, yadaydayada...

Good luck and feel better,

lisa

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,874
    • Most Online (within 30 mins)
      7,748

    LeeD
    Newest Member
    LeeD
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...