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
lgreg
Posted

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
Guest cassidy
Posted

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
Rachel--24
Posted

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
Guest webleybg
Posted

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
Lillyth
Posted
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
lgreg
Posted
  • Author

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.

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

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,925
    • Most Online (within 30 mins)
      7,748
    Jimlock
    Newest Member
    Jimlock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.