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

Help-what Is Wrong With Me?

Guest imsohungry

By Guest imsohungry
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest imsohungry
Guest imsohungry
Posted

Hey everybody,

I need help. I am trying so hard to remain gluten-free in order to feel better. But I am just trying to figure out if gluten is my only problem.

There is one major symptom that won't leave me alone after I eat: Fatigue and headache. They actually go together. It is like someone has set a ten pound weight on the back of my eyes making them close and my head feel off balance right after I eat certain foods. Anybody else get this feeling?

I wonder if it is food related because I don't get it every time I eat...but when it happens, it occurs within 15 minutes of eating and knocks me flat of my behind. The frustrating thing is that I can't find any particular food it is related to. It has gotten better since I have quit eating bread. But yesterday and today, I noticed it happened after I ate tropical flavored Starburst candy. I called the company and they are gluten-free. I am also CF, but I didn't see any evidence of Casein in them either. Help! I can't keep taking naps at work!!

Has anyone continued to have similar symptoms through recovery on the gluten-free diet? Is there anything obvious that I am overlooking to eliminate from my diet? I've been tested for hypoglycemia and thyroid problems, but they both came back within normal range. I really want to feel better. I keep thinking that there has got to be something obvious that I'm just overlooking to try eliminating.

Any ideas ya'll? Much hugs to everybody! -Julie :blink:B)

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

Celiac.com Sponsor (A8-M):


dbuhl79 Contributor
dbuhl79
Posted

Jules,

Just thought I'd try a stab in the dark here since you've been so helpful with my posts!

Do you notice it with sugar consumption? Maybe try eliminating as much as you can for a week and see if it improves. (Atlhough I know thats tough already being CF and gluten-free)

Would you perhaps really define them as migraines?

Caffeine intake?

Dehyrdation can cause headaches also and fatigue.

I know food allergies can quite often trigger headaches/migraines as symptoms, so it very well could be another allergen.

I guess another thought is try Enterolab's testing, everyone here raves about it!

beelzebubble Contributor
beelzebubble
Posted

msg? i have similar problems with msg.

darlindeb25 Collaborator
darlindeb25
Posted
:D hi beezlebubble---tell me things that msg is in---i have read labels that say "no msg"--is it listed as an ingred otherwise or am i missing something--i know many people have problems with msg---thanks for any info---deb
Guest imsohungry
Guest imsohungry
Posted

Hey everyone! Sorry it has taken me a while to respond...I had school this weekend...took my mid-term :blink: I'm keeping my fingers crossed that it went o.k.

Anyway, THANK YOU for the suggestions.

D-,

Thanks for the compliment :D Also, I hadn't thought of dehydration. How do I know if I'm dehydrated? I guess it could be sugar related or caffeine related, but if it is, it is not consistantly making me sick (sometimes I eat sugar with no problem).

As a side note, I do get migraines and I take a prescription medication for them. I've also been tested for food allergies, and I'm only mildly allergic to Tuna fish (kind of a random allergy) :rolleyes:

Thank you for the suggestions...I'm particularly curious about dehydration.

Hey there B-

What kind of foods have msg? What are the symptoms of intolerance? Thank you for your info.! B)

Much hugs and blessings -Jules

llj012564 Newbie
llj012564
Posted

MSG ( Monosodium Glutamate ) , Its in alot of stuff just read the ingredients it will be listed if its in there. I get migraines from it and my guts react to it as well so I avoid it at all cost. B)

Guest momof3
Guest momof3
Posted

Hi Julie,

I have been going to doctors for this for sometime now relating to sudden onset of fatiuge and so called passing out spells. Since march I have been to 13 doctors and admitted to the hospital 2x. Psuedo seizures, depression is my inital diagnoises. From march to july my spells were like a epi seizure(tremors). Now it's like slowly passing out. I can't say for me it's related to food. I could start out feeling o.k., start laundry,shower, and then be out of energy. I feel like a ballon that is being deflated. I sometimes have a short time to get to safe place before I go down. Losing muscle, can't open my eyes, verbaly unable to respond. My hearing varies to understanding, to unable to make since of voices.

I no longer drive. Doctors orders. I lost my job due to not driving. I drove high school students.

I went to UCLA yesterday for a follow up visit. He is going to run the scope to take a closer look on 12/14.

Hope this helps. I have posted during the first months of spells. I will try to find it and tell you where to look if you would like.

Debbie

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

Celiac.com Sponsor (A8-M):


Guest momof3
Guest momof3
Posted
Hi Julie,

I have been going to doctors for this for sometime now relating to sudden onset of fatiuge and so called passing out spells. Since march I have been to 13 doctors and admitted to the hospital 2x. Psuedo seizures, depression is my inital diagnoises. From march to july my spells were like a epi seizure(tremors). Now it's like slowly passing out. I can't say for me it's related to food. I could start out feeling o.k., start laundry,shower, and then be out of energy. I feel like a ballon that is being deflated. I sometimes have a short time to get to safe place before I go down.  Losing muscle, can't open my eyes, verbaly unable to respond. My hearing varies to understanding, to unable to make since of voices.

I no longer drive. Doctors orders. I lost my job due to not driving. I drove high school students.

I went to UCLA yesterday for a follow up visit. He is going to run the scope to take a closer look on 12/14.

Hope this helps. I have posted during the first months of spells. I will try to find it and tell you where to look if you would like.

Debbie

I posted under "related disorders" extreme weakness and fatigue.

kactuskandee Apprentice
kactuskandee
Posted

Julie,

You may want to start suspecting food dyes, or other additives that we still may not know what the affects are in sensitive people. Other than odd symptoms, I know no way of testing for sensitivity to them. We have so many chemicals in our foods now that it's a wonder some people function as well as they do.

Kandee

Guest imsohungry
Guest imsohungry
Posted

Oh my goodness...food additives! :blink:

I started looking up food additives and there are a million things to avoid!

I'm thinking that I may just chew on carrots for the rest of my life! Rabbits seem to live a happy life :rolleyes::P

Honestly, I would give anything to figure out what causes this fatigue and these headaches.

Debbie, I've read your posts (I thought that I had responded to it). :blink: Although, I won't swear to it. I so hope that they find out what is causing your struggles soon! Bless your heart...I've lost my job before also over a disability...only mine was for seizures. You hang in there o.k.? :)

Many blessings and much hugs everyone!

-Julie

mommida Enthusiast
mommida
Posted

Have you been tested for diabetes?

Laura

tom Contributor
tom
Posted

After everything else had gotten better but i still had headaches, i stopped eating sugary foods also and the headaches went away. Just a couple weeks ago this happened.

I've tested it a couple times; candy bar or something after 2 days or more w/ minimal sugar and each time i got the worst headache since the LAST time i tested ! hehe i guess i'm done testing for now.

I don't expect it to be this way forever, since things must be changing down there as the villi repair.

For now, instead of old fav Skippy Superchunk i get the natural one without the added sugar, and the gluten-free cereal w/ some sort of non-sucrose natural sounding sweetener, and splenda in the coffee, and on and on. It's far easier than starting gluten-free.

Guest imsohungry
Guest imsohungry
Posted

Laura,

I have been tested once for hypoglycemia and I did not have it. I assumed if there were any sugar-metabolism abnormalities they would have told me. Is there another test that you know of? I had a 4 or 6 hour long test at the hospital after fasting the evening before. When they gave me the sugar mixture, I fell asleep! They had to put me in the bed and wake me up every hour when I had to drink more of the mixture :blink: One of my friends who works in the hospital came down to say hey to me, and when she walked in she said I was "out" with my mouth hanging open and drooling :rolleyes: ....not exactly my best moment! :P

Tom,

thank you for your info.!

Much hugs ya'll

-Julie ;)

jaycee30 Apprentice
jaycee30
Posted

Hi Julie,

The EXACT same thing happened to me for years and for years I thought I had "funny" blood sugar. I would eat and 20 minutes later, I'd be just tired to death. Then, I started also sometimes getting weak, or feel like my heart skipped a beat, etc. I had my blood sugar tested and everything was fine but still the problem.

For me, I found out (the hard way) it was food allergy, IGG mediated. My reaction depended on not only the food I was eating that I was sensitive to, but also my "allergic burden" at the time. My allergist told me to think of it like a bucket. Everytime you exposed yourself to something that you are sensitive to, be it food, mold, cat hair, pollen, etc., it adds an allergic reaction chemical to your "bucket". Your body handles it fine when the bucket is almost empty, but when it finally gets full....BAM! you react! And since food sensitivities can really last for a few days, you can be adding to your bucket and not even knowing it.

My main culprit at the time was a severe IGG antibody to both egg white and egg yolk. So, one day, I'd have a salad with blue cheese dressing and be ok. Then the next day, a sandwich with mayo and I'd feel like a truck hit me! So I'd stay away from everything except fruit, veggies and meat for a few days, feel better, eat a sandwich again and I'd be fine. It was so confusing!

At any rate, I don't know if this helps, but you can try just spending a week on meat and veggies, rice or potatos....everything as plain as you can make it. See if that makes a difference for you. Then add something back in and eat it frequently for a couple of days. You could also try a food allergy panel from somewhere like York Nutrition Labs.....that is what I finally did and found the 10 things that I just can't eat. That cured my problems at least (along with assorted tummy trouble that even gluten-free diet didn't cure).

Hope this helps.

Jen

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,764
    • Most Online (within 30 mins)
      7,748
    CatherineAnne
    Newest Member
    CatherineAnne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lizzie42
      Gluten free and oat free bars not sugary?

      By lizzie42 · Posted

      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Still unsure.....

      By Wheatwacked · Posted

      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
×
×
  • Create New...