Jump to content

  • 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):

Symptoms.. Celiac Or Gluten Sensitive?

wockandwoll

Recommended Posts

wockandwoll Newbie
wockandwoll
Posted

Ok, so I'm really really new at this and just realized THIS MORNING that gluten could be what's causing all these crazy symptoms that I have.

I drank about 8 oz. of Florida's Natural orange juice this morning and had 2 bites of a bagel w/cream cheese and my stomach is so distended that i look 6 months pregnant. I'm bloated to the point of pain after I eat most meals. Usually I can't even eat til I'm full because I bloat so badly. I've lost weight but you can't tell because of how badly I bloat. I fluctuate between an 8 and an 11 it's so severe. Some pants I zip up with ease one day, and the next day i can't button them to save my life.

On top of that, my mood swings are crazy. One minute I'll be perfectly cheery, then I'll drop a fork or stub my toe and suddenly WATCH OUT!

I've always had very low iron levels and blood pressure; only when I was pregnant has my blood pressure even been close to normal.

I get random very painful headaches a couple times a week.

I fall asleep the minute I lay down, no matter where I am.

I've had 2 miscarriages.

I've gotten 5 cavities in the last 3 years, despite brushing at least twice a day every day. (?)

My eyes change vision all the time.. .my vision is terrible anyway, but some days will be way blurrier than others, depsite the fact that I wear my contacts daily. (?)

I get painful cramps in my hips and neck. I always feel like I need to stretch.

I am also allergic to Nickel and Sulfates. I'm scheduling my blood allergy test tomorrow. I would very much appreciate any help and advice to help alleviate symptoms as I have no idea how to go about this. Thank you!!!

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

Celiac.com Sponsor (A8-M):


Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Celiac and gluten sensitivity are pretty much the same thing, they are just on different parts of a spectrum. When you have Celiac you have villi damage and if you have gluten sensitivity you don't have damage... yet. The only way to know for sure is to have the doctor do a Celiac panel (bloodtest) but you must keep eating gluten for the tests to be accurate. You can also eliminate gluten from your diet and see if your health improves. Allergy testing won't tell you if you have Celiac but it could help you determine if other foods bother you. My Celiac tests were negative but I've had an amazing response from the gluten free diet, so I am self diagnosed as gluten intolerant. I am also having food allergy tests done soon to see if maybe I am missing something. Good luck!

jayhawkmom Enthusiast
jayhawkmom
Posted

I agree with Amy. I think gluten intolerance is just a stepping stone. I had positive blood tests, but my endoscopy was completely negative. Yet, my dietary response has been indisputable. I have had the gene testing done because my 7 year old does have Celiac. Those tests showed that I do have the genes, so even though I know I don't have "full blown" Celiac, I avoid gluten in the hopes that I never WILL have the villi damage that goes along with a Celiac diagnosis.

I've been sick enough without the damage.

KristaleeJane Contributor
KristaleeJane
Posted

Wow, your symptoms sound like exactly what I had before getting diagnosed. I actually have lost about 15 pounds and went down 2-3 waist sizes since going gluten free. Although a lot of people are the opposite, they will gain wait after going gluten free, it really depends on how advanced your symptoms are and how deficiant your are with nutrients.

Even if your tests are negative you should try the gluten free diet, and be very strict, to see if you notice a difference, it seems alot of people do.

But have all your testing done first, as once you start the diet it can alter the results.

Good luck

wockandwoll Newbie
wockandwoll
Posted
  • Author

Thanks to everyone for the insight. I bought some gluten-free products today, and I'm eager to see if this helps. The more I read about it, the more sure I am that this will help my symptoms. It is really difficult for me to figure out what's "safe" or not. Obviously bread, pasta, etc. But I'm gong out to dinner with family tonight and I don't have a clue what I can order. Any insight would be appreciated. I've found the list of what to look for as far as ingredients, but that won't help me tonight! And most of the lists of restaurants I've found don't have any that are around here (i WISH we had a PF Changs!! :lol: )

KristaleeJane Contributor
KristaleeJane
Posted

Restaurants can be very iffy. I rarely go out to eat now because you are taking a huge risk, unless they have gluten free menu and their staff are aware of cross contamination. For example one restaurant that I go to they have their Nachos on the gluten free menu, but they are actually fried in the same oil as all of the other gluten foods.

Some things you can be safe would be plain foods such as chicken and rice dishes, be very careful of the sauces that they put in them, soy sauce almost always has wheat in it, get in the habit of bringing your own.

Some seafood would be ok, but cannot be done in any type of batter, and be careful of BBQ sauce, sometimes has gluten

Salads are also a good choice, but again the dressing can be risky.

Your best bet is to do some online research, make some phone calls to restaruants and you will find some that specialize in gluten free foods and/or menu.

Trust me it gets easier and eventually just becomes a way of life......

Krista

ksymonds84 Enthusiast
ksymonds84
Posted

Just wanted to add to be careful with gluten free products in the beginning. They will be new to your system and may add some bloat as well. In the beginning its always best to do whole foods then gradually add new grains that you haven't had before such as quinoa, buckwheat, sourgum etc. Welcome to the board!

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

Celiac.com Sponsor (A8-M):


wockandwoll Newbie
wockandwoll
Posted
  • Author

How long will it take for me to feel better? Does anyone recommend drinking detox tea to help clean out my system a little bit? We have so few places here that carry ANYTHING gluten-free. This is going to be more difficult than I thought :(

samcarter Contributor
samcarter
Posted
How long will it take for me to feel better? Does anyone recommend drinking detox tea to help clean out my system a little bit? We have so few places here that carry ANYTHING gluten-free. This is going to be more difficult than I thought :(

It will take time for you to feel ALL better, and it also depends on the level of gluten you might still be accidentally getting through your counters, bowls, or whatever in your kitchen.

Eat whole foods--naked meats (no breading or fancy sauces), potatoes, vegetables (cooked will be easier on your system). Don't eat very fatty foods. I ate buttered popcorn the first gluten-free day and kind of felt sick. So focus on naturally gluten free foods, meats, eggs, fish, fruits, vegetables, rice, potatoes. Corn tortillas (but not a lot of corn tortilla chips, again, they may be too fatty). Don't try to get gluten-free substitutes for your breads, desserts, et cetera. Start slowly.

For the first immediate change was my morning fatigue. For literally years, I had never felt like getting out of bed; i had to drag myself out. The first gluten-free day i had, i woke up before my alarm and thought, "Hey, I feel like getting out of bed." It was amazing. My husband was very pleasantly surprised.

Teas can help, i'd just drink green tea and peppermint tea, keep it simple. Hot lemon water (hot water with a few lemon slices or lemon juice) can help stimulate digestion if you've struggled with constipation.

Lymetoo Contributor
Lymetoo
Posted

Be careful when ordering rice at a restaurant. I have found out that in many places, gluten is in the rice. Dont' ask me why or how... it just IS!!

I found out when ordering a meal at an Outback restaurant. I wanted a certain dish with rice and then mentioned the gluten issue. They said here is our gluten free menu.

Well, on the menu the rice was NOT listed as safe. I asked why not and the waitress said the rice contained gluten. Aha!! No wonder I've gotten ill in other restaurants when ordering rice!

No more!!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not...
    2. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas). Electrolytes may become unbalanced, so monitoring is needed as well. Just to rule out Thiamine deficiency...
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,055
    • Most Online (within 30 mins)
      10,442
    Bubba89
    Newest Member
    Bubba89
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
×
×
  • Create New...