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

Trying To Figure This All Out


lgreg

Recommended Posts

lgreg Newbie

In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!


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



Celiac.com Sponsor (A8-M):



Guest cassidy

It certainly couldn't hurt to try a gluten-free diet. A lot of us have been in the same position with doctors. If you try gluten-free, I would stick to a basic diet that is naturally gluten-free, like meats, fruits and veggies. If gluten is your problem, it will take your system time to heal. I didn't start feeling better at all for 2 weeks. After that I had good and bad days for a while. Now, 3 months in, I'm doing very well and have adjusted. Good luck figuring it out, I know it can be tough!

Rachel--24 Collaborator

It doesnt sound like you've been tested for Celiac so why not go ahead with that before changing your diet? You need to be eating gluten in order for tests to be accurate so once you start the diet you can no longer have those tests w/out going back on gluten for several weeks or months. Maybe schedule with a different doctor since you didnt like the one you saw...push for the Celiac panel (make sure its the whole panel) and get the tests done. Then start the diet and see how it works for you. Even if the tests are negative the diet may be your answer. If I were in your shoes I'd do the bloodwork so as to not have unanswered questions later on.

Guest webleybg

Do you live in a small town? I have found that I have to really push to get the right testing done. I live in a small town, and when I was first diagnosed my Dr. had spent a whole YEAR testing me for bacterial infections - ghiardia - ulcers, and more. She even tried to diagnose me with "Irritable Bowel Syndrome", and when I wouldn't back down she finally said she would try something else. She happened to test me for the Celiac blood panel, and I found out the only reason she did that was because a Dr.'s wife in her office had been diagnosed the year before. Otherwise she knew nothing about it (I'm grateful she tested me though). Anyway, my recommendation is don't back down! Good for you for hanging in there & keep doing so even when you feel like they think you're making everything up - just keep at it until you get a response. I have learned the hard way that Dr.'s don't always know what to look at, and sometimes are too quick to make a generic diagnosis. It doesn't mean they are bad at their job, but some need encouragement or even help from the patient in order to make the accurate diagnosis. If they diagnose you and you feel that the diagnosis is inaccurate then you have to speak up about that too! GOOD LUCK! ;)

Lillyth Explorer
In my journey to figure out what is going on with me, I came across this site.

After more than four months of feeling totally horrible, and trying on my own to get healthy, I gave in and went to the doctor last week, (I am a certified doctor-phobe). This is a new doctor that I have only seen once. I had my laundery list of symptoms.....weight gain, bloating, terrible gas, bowel issues, headaches, dry skin, always cold, achy achy achy muscles all the time, sleep irregularity, total fatigue, and well, yeah, depression cause I feel like crap! I left the office almost in tears, felt totally dismissed by her and frustrated. I went back first thing the next morning to have my fasting bloodwork done, and waited on pins and needles for Monday to get the results. Was told Mond. afternoon, that she would call when she had the results, and then got them in the mail the next day!!! She hasn't even followed up with a call.....even though she told me she wanted an immediate colonoscopy scheduled if the labs were normal, which they were. To my poor husband's dismay, I feel now I will just forge ahead on my own and try and figure this out. Would it seem appropriate to try a gluten free diet on my own to see if I feel better? I don't really know what to do next, I just know I feel worse almost every day. I am about to enter a very busy time professionally, and need to get my groove back on....like now!

Help!

Those are the same symptoms I had/have. I had no idea what was wrong with me.

Then my husband & I went on a fast together (pre-wedding, to flush out all the "bad stuff" we didn't want to take with us into the marriage), and blammo! I had a peice of ravioli & immediatly had a headache, felt exhausted, etc. I didn't look back after that.

(I thought at first it was a wheat allergy & started eating spelt, kaut, etc., but I was still tired all the time. So I'm now on another fast to get that gluten out.

Like the others suggest though, I'd do all the tests now, while you're on gluten - when I went to the doc this morning, there were tests she couldn't do becuse I no longer eat gluten. But after the tests are done, I'd go gluten free for at least 3 weeks, then have a peice of toast. I knew within 20 minutes of eating wheat - but I don't know if that's everyone.

Good luck, and I hope you get this figured out soon! (It's the pits not to know)...

Lillyth

lgreg Newbie

Oh wow,

Thank you all for your GREAT responses! I didn't even think (duh) about not being able to be tested for Celiec if I put myself on a Gluten Free Diet!

Yes, I live in a very small town, this doctor is about an hour away in a larger town and I chose her based on her bio.....obviously she had someone write it for her!!!!!

There is a naturopath in town that I have a call in to, and need to see if my insurance will cover him I think a naturopath will be more in tune with my personal philosophies, and be much more proactive than mainstream physicians.

I just got my work schedule for the next few months, and will be traveling a lot in June and July, so I need to get myself healthy and strong again. I also will be working caterers hours....so stamina will be key. I am bound and determined to get to the bottom of this!

Again, thank you all.....I will keep you informed!

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. - YoshiLuckyJackpotWinner888 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Reverse Osmosis (RO) Water

    2. - YoshiLuckyJackpotWinner888 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Water filters are a potential problem for Celiac Disease

    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

    4. - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      39

      Blood results

    5. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

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

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter.  Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions.  Steam distilled water is safe.  Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe so far.
    • YoshiLuckyJackpotWinner888
      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not sure if the casein was worse or the naturally occurring cheese mold in aged cheddar did it. I am IgG sensitive to yeast. Casein, yeast, or mold in the cheese might have been part or equally bad.
    • YoshiLuckyJackpotWinner888
      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten.  I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain which I am now aware of. If I purposely expose myself to gluten, I seem to have antibodies attack certain areas of my body which cause this reaction within 30 minutes of exposure. I can tell rather quickly if I was exposed and it never happens, unless gluten is present. In the past 5 years since my diagnosis , I may have noticed occasional pains or odd sensations after drinking bottled water that was filtered.  It never made sense to me why this was happening.  A few months ago I was at a gas station and purchased a Gatorade filtered water bottle product. Within 30 minutes, I had pains associated with gluten exposure that I had not felt for years. I knew it had to be the water bottle contents because nothing else was consumed all day. This was a wake up call for me. I searched and found out a thread about water filters containing starch binders to bind charcoal, which is used commonly, and I found out that grains are potentially used for the starch source.  Gluten is in certain grains, and according to a study in the past two years, many grain proteins and casein from dairy can cross react with celiac. This Gatorade water bottle had water that was likely filtered with a filter that may have had actual gluten. I am also sensitive to the other cross reactive proteins from grains and casein, but the pains that day were distinct. I can absolutely tell the difference if I come into contact with corn or other grains. The reaction is different. My point is bottled water that has been filtered can potentially be exposing us, if they use starch binders from grain products. We have no real practical way of knowing what water filters may have inside of them, unless a law requires disclosure on the label. This is not only going to affect bottled water, but also all products that were made with filtered water. Since cross reactions to other grain proteins is now a real issue, simply stating  gluten free is not enough. How can you know if your store bought lemonade does not have filtered water with gluten or other grain protein contamination?  Did that kombacha you just drank happen to have filter contamination of corn and you suddenly feel a headache and odd chest pains? Distilled water may be the only safe bottled water. We can’t trust water filters until the law changes and requires processing plants to disclose these contaminants.  I don’t ever have a problem with distilled water as long as it was steam distilled.  Regular bottled water has set off noticeable sensations and pains over 5 years of observing these. The Gatorade water was the worst and most alarming.  Stay safe. 
    • knitty kitty
      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  
    • knitty kitty
      I'm so glad your daughter got her B12 level checked at last!  
×
×
  • 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.