Jump to content
  • 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

Frustrated, Scared, And Exhausted


SickABeinSick

Recommended Posts

SickABeinSick Newbie

Hey Everyone, First off all your posts have been extremely helpful and informative, it's comforting to know i am not the only one out there feeling this way.

Anyways, i am having a difficult time determing what exactly is wrong with me. So any help would be GREATLY appreciated.

I'm a 22 yr old female, I had my first stomach issue when i was 14, basically ecruciating gas pains followed by diarreah. Only one night, not even sure what I ate. However in the past 2 years those same pains have come back. And have grown progressively worse over time. Usually the stomach pains would be once every four or five months, then to two or three months, then once a month, and now (for the past 3 months) they have grown to about 8-10 times per month. It used to happen immediately after eating out, especially Japanese Hibachi or Italian. The pains are so bad that i cry and crawl into a ball on the floor. I suffer from constipation and it is hard to get a BM after the pains, so i use suppositories to help. More recently the pains have ranged from mild to severe depending on what i eat. And have started from foods that i prepare myself as well.

Other side effects that bother me are:

- The increase of blinding headaches, twice a month, lasting for 3-5 days. Nothing works for them. Started in October.

-Fatigue during the day

-Almost constant low grade fever of 99.5

-Canker sores, (but not sure if it's because i could be biting me mouth in my sleep)

-Restlessness at night

-Panic Attacks and Anxiety

-Muscle pain in my legs and left arm. Sometimes so bad that i find it hard to push the peddle when i drive. (does not happen very often)

-Tingle in my left arm that runs down the entire length even into my fingers.

-Neck pain, shoulder and neck muscles are always tense and sore.

-Bloating almost always,my tummy is never flat and im very thin and work out regularly.

-Noticed that my vision has gotten pretty blurry in the past year, more so in my left eye. Hard to drive at night too. And sometime my eyes hurt.

-Sinus infections, congestion almost everyday.

-Feeling of a heavy chest often (could be anxiety)

I am so tired of not knowing what is wrong with me, it is a never=ending battle and my family/friends/and boyfriend just say im a hypochondriac and think i am crazy or making it up. IM NOT!! My symptoms are real and i want help!

Ive been to 3 gastros who said i had IBS and put me on Meds that never worked.

Ive been to a neurologist for the headaches, had an MRI, and he said its prob migraines.

I always pass physicals with flying colors.

WHAT IS WRONG WITH ME!!!! :(


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Welcome to the Forum!!!

I say try to the gluten-free diet. You have absolutely nothing to lose, except maybe your pain. I had the headaches, too. Nothing made them go away, from tylenol, to excedrin, NOTHING!!! and now, I know that exact headache, which I also get when I eat eggs (I'm allergic to egg whites).

When I did my elimination diet, I didn't have a headache for a whole week... WOW! and the last thing I reintroduced was gluten. Within an hour or two, horrible headache that had me laying on the couch for the rest of the night. I also have sinus problems, which, honestly, I just started taking Zyrtec and that has seemed to be the final piece. My sinus pressure has started to go away.

So... there are many of us who think that IBS is merely a symptom, and once you found out what causes the irritation, you can begin to correct the problem. I think the fact that you are on this forum shows that you are suspect that gluten could be your problem. So, try it for 2 weeks. See what happens. Your symptoms may not go away entirely, BUT, they may begin to improve.

Again, welcome, and feel free to ask ANY questions!!!

Mom23boys Contributor

I've had almost all the symptoms you have described...especially the rolling into a ball on the floor. The pains were so horrible and I would just lie on the floor for hours. I couldn't even get up into bed.

Mine is mostly from milk although we have just learned that the "leftovers" are from gluten. If you haven't started, you may want to consider testing both.

CarlaB Enthusiast

Check out this thread, this also fits your symptoms. Open Original Shared Link

Did anyone ever test you for celiac disease? It's such an easy test ..... and it would answer your question on whether you have it!

Don't give up till you find what's wrong .... I didn't and today I'm feeling much, much better. Hang in there, it's tough, especially when no one believes you because your symptoms change faster than the weather.

Ginsou Explorer

Your symptoms certainly sound like celiac and/or lactose intolerance. I remember those days many years ago when I also was in excrutiating pain rolled up in a ball and holding my breath....the pain was on the level of childbirth pain. A simple lactose intolerance test will determine if lactose is a problem. Alternating diarrhea and constipation and gas have always been a problem with me. I developed the lactose problem 30 years ago.

This past year I developed additional abdominal pain and distention 24/7, sharp stinging pains in various parts of my body that only lasted a few seconds, tingling mostly up my back,muscle or nerve twitching, nausea, heartburn that did not respond to Nexium/Protonix. After having normal blood test results by a gastro dr. I had the Enterolab test done (I had no insurance) and found out I have double celiac genes, also positive for casein and soy!! I had previously been diagnosed with IBS and/or diverticulitus and the meds prescribed did nothing but make me sicker. Without the Enterolab test, I would have not known what the real problem was for years!

This forum is the best site for info.....you really should be tested....and if the blood tests are negative, have further testing done to rule out celiac.

Archived

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

  • 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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.