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

Help Finding The Best Doctor You Know


Goku

Recommended Posts

Goku Newbie

Hello Everyone,

First of all I wanted to thank you all for sharing your advice, your stories, and your time on this forum because it's definitely helped me out a lot. It's been really good for me to hear stories similar to mine and share in those experiences with people as I honestly do not know people around me who suffer from the issues we do or can even sympathize with what's going on. Even your signatures are encouraging to me because it lets me see how I'm not the only one! My signature should disclose my discoveries thus far.

So here is my dilemma. I have had several appointments, out of pocket, with a nutritionist who in my experience with had initially been positive but in terms of progress had become negative. I'm very thankful the nutritionist discovered my intolerances and showed me the link of emotional issues/depression to the gut ... But she has not really advised me much beyond the elimination process and it has now been about four months. Now I am developing intolerances to the foods I have been eating in the elimination process (which I was warned about).

This nutritionist has also consistently recommended (until I negatively reacted often enough times) supplements that contain ingredients my IGG showed! I thought that to be odd, I was told they were "bio-available" therefore I should not react to them, which I did not understand, and oh boy did I react to them. One had parts of soy in it (MediClear), the other was called "Juice Plus" containing more than one element of foods I am allergic to (which this company just seems shady with no details of the amount of what's inside the capsules except food, and does pay the people who recommend it. On it are pictures of pineapples and other fruits and veggies that I have allergies to like kiwi). The other product was "Heartburn Free" which resulted in reactions because I'm allergic to oranges. I also used another product they personally make and had issues with it so had to stop taking it.

I kept good faith for a while but I'm definitely staggering along now and fairly discouraged, especially because I'm paying out of pocket and I'm not getting answers to my questions regarding my issue. Now I am doing even more studying and investigation myself but am short in understanding and resources. I know no one is perfect but I want to hear input from people who are more seasoned in these matters.

And doctors, well you're all too familiar with that. I've been to plenty. I have a history of GERD and Barrett's, healed by God's grace. They either don't believe in food intolerances like this, tell me "I'm fine" run bloodwork that checks out, scream "quick get back on antacids that give you more heartburn!" blah blah waste of my life blah BLAH!

Two problems...

1. I don't know which to go to (Doctor/Nutritionist/Both?) and who specifically could help in my area. I have insurance. If you could be as specific as possible with your recommendations (Name/Practice) and your personal experiences would be worth gold. I would really appreciate it as I plan on making the decision very soon and am waiting to hear from this forum before I go out to make appointments again.

2. And I don't know what the next step is beyond elimination ... and it seems I have less time than I thought since I am developing issues with rice which was my substitute. I was told I will not get better by just removing foods but need to repair. I know the four steps only by name but don't know anything else about them or how to tackle them. Any info, other threads, or resources you have for someone like me please let me know. I have been taking enzymedica digest gold which has allowed me to eat more normal portions of food but that's my latest positive discovery.

Please also let me know if I should repost this question in another area of the site for the best amount of responses.

Thank you so much!


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.