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

Frusterated With Doctors Could This Be Celiac?


Smokeybear

Recommended Posts

Smokeybear Newbie

Ok i am male and 20 years old. i'm overweight i know lol. about 3 months ago i started feeling bloated and full short of breath and weak. thought maybe it was an infection talked to my doctor and he prescribed me bactrum and sent me home. few weeks later still the same except now i'm getting weaker. i've lost alot of my energy barely feel like getting up. i have sharp pains in the center of my chest sometimes on the left side of my chest in my arms and sometimes in my neck but mostly in the center of my chest. i've been run thru the mill about my heart but it all checks clean blood work is all clean. i've been out of work for 2 weeks now so i don't eat much and i've noticed that i don't feel half as bad. but when i eat something certain times i get to hurting in my chest and short of breath. I've had acid reflux for about a year now and stomach ulcers when i was in college. i'm on omeprazal for that. i hope this isn't TMI but I've also noticed i have fatty stool that is light in color and floats. i also get dizzy headed alot at times too sometimes a light headed feeling. my doctor says he thinks it is esophageal spasms. i know that when i start hurting in my chest it can last 10 to 30 mins and the shortness of breath can last awhile. could this be celiac or should i be looking elsewhere.


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

One of the reasons I think it's hard to get a diagnoses is that there are SO many symptoms we can get from gluten if we're sensitive to it? Sometimes the answer isn't gluten, but it sure can't hurt to find out? If you've been eating it all along ask your Dr. for a celiac blood test. A LOT of Drs. only think of celiac if you have diarhea, unexplained weight loss, and anemia. It's a shame they miss the other symptoms.

If your blood test comes back positive you'll know for sure. If your test comes back negative.. I recommend a trial of a completely gluten free diet for 3 months. There are a lot of posts here on how to look for trace amounts..so you'll have to do some reading and a little detective work. Good luck to you! I hope you get some answers.

Smokeybear Newbie

One of the reasons I think it's hard to get a diagnoses is that there are SO many symptoms we can get from gluten if we're sensitive to it? Sometimes the answer isn't gluten, but it sure can't hurt to find out? If you've been eating it all along ask your Dr. for a celiac blood test. A LOT of Drs. only think of celiac if you have diarhea, unexplained weight loss, and anemia. It's a shame they miss the other symptoms.

If your blood test comes back positive you'll know for sure. If your test comes back negative.. I recommend a trial of a completely gluten free diet for 3 months. There are a lot of posts here on how to look for trace amounts..so you'll have to do some reading and a little detective work. Good luck to you! I hope you get some answers.

Me too. my doctor seems to act like he is sure it is esophageal spasms but he has not attempted to send me to a GI specialist. i know for the last few years I've had problems with joint pain in my fingers and such back pain and GI problems but i played em off as just something bad i ate. but then when i got short of breath and pain in my chest it scared me. and I've gotten extremely weak just doing house hold things has became a challenge for me and i was always strong as an ox. i haven't been to work in two weeks i just lie around all day and i don't eat much when i lie around and I've noticed that i don't get the pains that often but when i go out to eat or eat a large meal or something i go to hurting pretty bad. looking over the forums and several other sites I'm starting to wonder if maybe this has been the cause of alot of my problems for years that I've been getting treated for individually when they are actually connected.

rosetapper23 Explorer

They might be esophageal spasms, but I get those after I've eaten gluten...so that might be the culprit for you, too. I don't have much regard for doctors, and celiac is usually too much of a challenge for them. You might try going gluten free to see if your symptoms resolve. They sound like typical celiac symptoms to me; however, they are also symptoms of other disorders....but it's easy to go gluten free, so why not try?

Smokeybear Newbie

They might be esophageal spasms, but I get those after I've eaten gluten...so that might be the culprit for you, too. I don't have much regard for doctors, and celiac is usually too much of a challenge for them. You might try going gluten free to see if your symptoms resolve. They sound like typical celiac symptoms to me; however, they are also symptoms of other disorders....but it's easy to go gluten free, so why not try?

Can someone please give me an idea and maybe some good things to eat and what not to eat? and i'm hopeing you guys tell me i can still eat my hotwings. i LOVE hotwings. but i don't feel too bad when i eat those it's other things sometimes i ain't even gotta really eat and i can start hurting.

MissKris2 Newbie

If you want to be tested for celiac, do it before you start eating gluten free. Otherwise you might get false negatives on the tests. I started eating gluten-free and felt a lot better but I had to start eating it again to get a diagnosis. You can ask the doctor to order a celiac panel and go from there. It's totally up to you if you want to get tested or just go gluten free and see how you feel.

rosetapper23 Explorer

I don't know about the hotwings--what are the ingredients? I'm sure you can find a gluten-free recipe somewhere on this site for hotwings.

As for what to eat, generally it's best to eat natural foods for a while so that you can avoid cross-contamination. That means meat, fruit, vegetables, potatoes, rice, dairy, and nuts. Be careful with the dairy--I usually choose to eat organic brands and have had no gluten contamination from them. Be extra-careful with yogurts--look for "gluten-free" on the packaging. Certain cereals are gluten free: Cocoa Pebbles, Fruity Pebbles (without the marshmallows), and specially marked boxes of Chex and Rice Krispies cereals. Don't eat soy sauce because it contains wheat, but you can use wheat-free Tamari sauce instead. Don't eat anything that is processed for at least a few months. Don't drink beer, but you can drink wine and a few other drinks (you'll have to check the alcoholic list on this site). There are good gluten-free mixed flours out there for baking (I like Bob's Red Mill products). If you bake something, don't forget to add a few teaspoons of xanthan gum.

As for gluten-free alternatives that you feel you really need to eat, the best pasta appears to be Tinkiyada, and the best breads are Against the Grain Gourmet Baquettes, Rudi's, and Udi's--you can find these brands in the frozen food section of most upscale supermarkets. As for crackers, I personally like Crunchmaster, which can be found among the regular crackers, and Glutino has a good line of Ritz-like crackers that can be found with the gluten-free foods. There are a number of gluten-free pizzas, and I like Glutino best...but I know that other folks on this forum have found other brands throughout the U.S. that they like better. No all brands are available everywhere. As for salad dressings, I just use balsamic vinegar and olive oil.

Hope this helps!


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



Celiac.com Sponsor (A8-M):



krystynycole Contributor

If you want to be tested for celiac, do it before you start eating gluten free. Otherwise you might get false negatives on the tests. I started eating gluten-free and felt a lot better but I had to start eating it again to get a diagnosis. You can ask the doctor to order a celiac panel and go from there. It's totally up to you if you want to get tested or just go gluten free and see how you feel.

My husband buys his own wings without breading. Sometimes he uses gluten-free bread crumbs, other times just plain. Then fried them in our home fryer (that is always gluten-free!!!) with his choice of sauce on top. Still tastes great, but safe at home!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - thejayland10 replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      TTG IgA and IGA elevated mildy

    2. - HilaryM posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      New onset constant gas

    3. - knitty kitty replied to Bindi's topic in Super Sensitive People
      43

      Refractory or super sensitive?

    4. - lizzie42 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Gluten free and oat free bars not sugary?

    5. - knitty kitty replied to MagsM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Inflammation and Menier’s disease link?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,769
    • Most Online (within 30 mins)
      7,748

    Francie Bailey
    Newest Member
    Francie Bailey
    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

    • thejayland10
      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
    • HilaryM
      Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel like I have zero control over this. Any ideas? Thank you!
    • knitty kitty
      @Levi, How are you doing?  Sorry I missed your posts.   How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.   Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.   Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.   Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.   Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste
    • lizzie42
      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
      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!
×
×
  • Create New...