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

Family Doctor Not Acting On Results

Josina

Recommended Posts

Josina Newbie
Josina
Posted

Hello everyone!

I am very new here. I have been battling gluten and lactose intolerance now for the past 8 years. I just learned about Celiac Disease from a neighbour in the past few years. I have been asking my doctor for most of the past 8 years if I could be tested for food allergies. I was very grateful to learn that I was not going crazy. (family not very supportive). I was finally tested for Celiac Disease by blood and my results came back positive. I believe that I have been battling this disease for most of my life. My doctor still believes it is no big deal! After reading on the net and this site, I am realizing that this is very much a big deal.

Would someone please tell me what my next step should be. I have put myself on a Gluten free diet. I know in the past that has worked. I did not realize that shampoo and soaps etc. can harm me. What kind of doctor do I have to see next, and do I really have to have more testing? It seems really insane to have to keep eating foods that will continue to harm me and make me feel horrible?

I also would like to know, does this disease effect moods and depression etc. There seems to be so much info that I am unable to find on the sites that I have been to. I have learned more here than anywhere else. I read that 1 out of 133 North Americans suffer from Celiac Disease!

Thank you!

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

Welcome to the forum and here is to your future good health.

I was only diagnosed with a blood test as I was literally almost dead by the time I was diagnosed. I was to sick for the endoscopy and my GP wanted me to go gluten free right then. He said another two weeks and I would have had no recovery. So, if I had been told to keep eating gluten and wait for the endo, I would not have done so. It just was not an option for me.

As far as depression, I had very little, but I had unbelivable mood swings. In that I could throw such a temper tantrum that would scare anybody, including myself. I used to break things, even things I loved during these tantrums. I would be telling myself to calm down and shut up, but there was no way I could. They just had to play themselves out. After I went gluten free, they went away. I can still get mad at something, but it is calm and with rational thinking.

You will notice many changes in the coming months both physical and mental. Welcome to a good new life.

AndreaB Contributor
AndreaB
Posted

The next step would be biospy if you want to do that. It's certainly not necessary in my opinion though. If you are comfortable going gluten free based on the blood test and diet response then go ahead.

If you want the "gold" standard diagnosis by biopsy then you'll need to stay on gluten until that is over with.

Murph Newbie
Murph
Posted
I read that 1 out of 133 North Americans suffer from Celiac Disease!

Ya, that's not really SUFFER suffer. I think it's that there is data that 1 in 133 have the genes to *potentially* have celiac disease activated. And even among those w/ active celiac, the magnitude of the effect on their lives varies drastically.

That being said - best of luck in finding a better Dr. They ARE out there! Being gluten-free is tough and frustrating for a while, but you'll get used to both the diet and the feeling good!!

aikiducky Apprentice
aikiducky
Posted

Murpf, it really is 1 in 133 with active celiac. As to the genes, about 40% of the population have the genes to potentially have celiac activated, but as you see, about 1%-and-a-bit actually get celiac. It's really much more common than people think!

I'm not saying that you were advocating not going gluten free...just wanted to clarify in case someone new read this: Some celiacs can be asymptomatic and so not notice a big effect on their lives immediately, but the tricky thing is that if one doesn't go gluten free, no one can predict who's going to get the really bad problems later in life, like damage from severe vitamin deficiencies, neurological symptoms, or cancer.

Pauliina

Karen B. Explorer
Karen B.
Posted
Ya, that's not really SUFFER suffer. I think it's that there is data that 1 in 133 have the genes to *potentially* have celiac disease activated. And even among those w/ active celiac, the magnitude of the effect on their lives varies drastically.

That being said - best of luck in finding a better Dr. They ARE out there! Being gluten-free is tough and frustrating for a while, but you'll get used to both the diet and the feeling good!!

https://www.celiac.com/st_prod.html?p_prodi...-19107121139.04

Celiac.com 04/10/2005 - Celiac disease is, by definition, a condition in which the intestinal wall is damaged as a result of eating gluten. It is a chronic illness in which the symptoms wax and wane1 for reasons that are not yet understood. Celiac disease is the result of genetic and environmental factors. We now know two HLA markers (DQ2 and DQ8) for the predisposition for celiac disease2. One environmental factor is, of course, the consumption of gluten, but there may be other environmental contributors. Recent research reveals that about 1% of the population suffers from this condition although most remain undiagnosed.

No, that's 1 in 133 that actually have it. When you consider the number of ads for reflux drugs, IBS drugs, diarrhea drugs and osteoporsis drugs, you'll see where some of those people might be hiding. Since there is no drug for Celiac, it's not nearly as well known but I suspect we provide a great market for all of these products before we finally find our way to a diagnosis. I know I took Prevacid for 5 years before finding out I have Celiac. Haven't needed it since going gluten-free.

Karen B. Explorer
Karen B.
Posted
Hello everyone!

I am very new here. I have been battling gluten and lactose intolerance now for the past 8 years. I just learned about Celiac Disease from a neighbour in the past few years. I have been asking my doctor for most of the past 8 years if I could be tested for food allergies. I was very grateful to learn that I was not going crazy. (family not very supportive). I was finally tested for Celiac Disease by blood and my results came back positive. I believe that I have been battling this disease for most of my life. My doctor still believes it is no big deal! After reading on the net and this site, I am realizing that this is very much a big deal.

Would someone please tell me what my next step should be. I have put myself on a Gluten free diet. I know in the past that has worked. I did not realize that shampoo and soaps etc. can harm me. What kind of doctor do I have to see next, and do I really have to have more testing? It seems really insane to have to keep eating foods that will continue to harm me and make me feel horrible?

I also would like to know, does this disease effect moods and depression etc. There seems to be so much info that I am unable to find on the sites that I have been to. I have learned more here than anywhere else. I read that 1 out of 133 North Americans suffer from Celiac Disease!

Thank you!

The next step I'd take, if I were you, is finding a local supprt group because they could recommend a doctor that is knowledgeable about Celiac issues and will listen to you. They'll also be a great source of information about what to expect, where the best sources are locally for gluten-free food and supprt for where you are now.

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

Also, the Celiac.com website is definitely my first "go to" place for Celiac info online. But you may find Clan Thompson handy (Open Original Shared Link) and there are others out there that are very informative, helpful and some are downright entertaining.

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

Celiac.com Sponsor (A8-M):


little-c Contributor
little-c
Posted

I'm newly diagnosed also. I did have a positive biopsy, so no question with me. My next step was to see a dietician to get tips on how to follow a gluten free diet. You need to be sure that it's a dietician that knows about celiac.

I also recommend that you read "Celiac Disease: A Hidden Epidemic" by Peter H.R. Green and Rory Jones. Dr. Green is the foremost expert on celiac disease. I just finished reading it. There's an explanation of the disease, the diagnosis process, how to cope, how to read labels, etc, pretty much any angle you can think of. I checked it out from the library.

And, the internet has tons of information. This site in particular has great info and this forum has helped me cope.

You'll need to do an inventory of your kitchen foods and cookware. Out with the old, in with the gluten free. And, you'll need to find sources for gluten free food. This site is a good one, also Whole Foods has bakery if there's one near you. I've also found that there are quite a few mail order bakeries for gluten free stuff if you just search. Hopefully you live in a celiac friendly area. If you don't the internet will be a godsend.

Good luck in adjusting to your new lifestyle. It takes time and patience. The good news is you'll feel much better.

Josina Newbie
Josina
Posted
  • Author

Thanks everyone!!!

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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

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

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.