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. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

    2. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

    3. - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

    4. - knitty kitty replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

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

    • Total Members
      133,578
    • Most Online (within 30 mins)
      7,748

    BilboB
    Newest Member
    BilboB
    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

    • Known1
      I did another Google Search and found this on the GE appliance website regarding their GE® RPWFE™ REFRIGERATOR WATER FILTER 3-PACK. Just go down the QA section and type the word gluten in the search.  Here are the results: As mentioned in my last post, if you plan to use a filter it is a good idea to contact the manufacturer.
    • Known1
      I am sorry to hear you went through that @YoshiLuckyJackpotWinner888.  That could not have been an easy thing to figure out.  I just used Uncle Google to perform this search:  "Can water filters contain gluten?" Here is the AI overview that was returned: Yes, some water filters can theoretically contain or be processed with gluten. While rare, certain refrigerator or pitcher filters may use wheat starch as a binder for the activated carbon. For individuals with high sensitivity or celiac disease, contacting the manufacturer to confirm if they use wheat or corn starch is recommended.  Potential Risk: Some refrigerator and aftermarket filters may use wheat-based components to bind carbon, potentially causing issues for those with celiac disease or gluten sensitivities. Alternatives: Many water filters, such as those from AquaTru Water, are explicitly manufactured to be free of gluten, corn, and soy. General Safety: Most standard water filters are safe, and the risk of significant gluten contamination is low, but not zero for highly sensitive individuals.  If you are highly sensitive, checking with the specific manufacturer of your filter is the safest course of action. --End Quote
    • YoshiLuckyJackpotWinner888
      Most people are already deficient in minerals.  I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter.  I happen to get over 100% of rda vitamins and minerals.   I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined. I don’t know anyone else that does. The rda is closer to 4700 mg a day. For anyone else that might be deficient, I suppose tap water might be a better option.  I personally can’t stand the taste of most city tap water sources.  I don’t mind mineral water and prefer it when possible. I recently found out we would need to drink 5 liters of San Pellagrino mineral water a day to get enough lithium to satisfy the suggested 1 mg a day. Unfortunately, this and other mineral waters can also have trace amounts of uranium that occur naturally in nature. Uranium is not a good thing to have in your water. I wouldn’t want that or naturally occurring lead in my water.  There is no perfect solution for drinking water.  Smart water distills and then adds back in some electrolytes.  I could evaporate two gallons day of tap water or mineral water and the remaining sodium, potassium, calcium, magnesium, iron, etc… wouldn’t amount to what I already consume on a daily basis. I’m not worried about drinking distilled water. 
    • knitty kitty
      Reverse osmosis water pulls electrolyte minerals out of the body.  If used for cooking, RO water will even pull even more electrolytes out of the food.  If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance.  The symptoms of Electrolyte Imbalance are similar to those that occur with being exposed to gluten.   Also consider that many people with Celiac disease have malabsorption issues and may already be low in electrolytes.  Exposure to RO water may create some health changes more quickly than in healthier individuals.   RO water impacts the body in many ways.  Read this fascinating study.   Long-Term Consumption of Purified Water Altered Amino Acid, Fatty Acid and Energy Metabolism in Livers of Rats https://pmc.ncbi.nlm.nih.gov/articles/PMC11122726/ Drink mineral water.  
    • Wheatwacked
      Library paste and paper mache.  I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering.  Just have to boycott the brands that effect you.  Gatorade drinks all have either gums, modified starches or stevia that might be affecting you.  Looking for energy or hydration try Red Bull.  It has the vitamins, minerals, antioxidant Taurine, sugar and glucose to process the sugar from mouth to ATP and clean up. Taurine is essential for protecting mitochondria from damage, such as from reactive oxygen species (ROS) or calcium overload. If you are exclusively drinking bottled water you may want to consider taking Lithium Orotate 5 mg.  We need about 1 mg a day of Lithium and mostly it is gotten from ground water.  Lithium deficiency can cause anxiety and suicide.  I find it helpful. Lithium in the public water supply and suicide mortality in Texas: Journal of Psychiatric Research Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification
×
×
  • 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.