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

Going For A Second Oppinion


tiredeyes

Recommended Posts

tiredeyes Newbie
:huh: Hi, Im semi new in here. One of my daughters who is around 4 and a half, was diagnosed by biopsy about April last year with coeliac disease. All is going good for her, but now I have my own health problems. I was tested for coeliac disease near the end of 2007, blood test showed a possability but biopsy "appeared" normal. I have been having abdominal bloating and pains for many years and have had 4 laperoscapies (? on spelling ) key hole surgary for suspected endometriosus. That was over a aprox. 12 year period of time.They only found small amounts of endo. and pains always returned.( My mum started to call me a hypocandiact) Recently I was back to another gynocologist because the pains were starting to get to me, she looked outside the square so to speak. She sent me to a physiotheropist to work on my stomach muscles and pelvic floor to ease the pains. This helped a bit, but the more I read about other peoples symptoms of coeliac disease the more my husband and I believe that is what the problem has been all along. Not only do I have the pains & bloating but I suffer extream tiredness, rash on forehead, itchy scalp, moodiness, intergestion/heartburn, weight loss........ I tried my daughters gluten free diet for 3 weeks & both myself and my husband noticed a extream difference in all of the above problems. I had so much more energy and felt sooo much better, but I knew it could not last and so I am back off it so I can be retestered & feeling I my old tired, painfull self. Does anyone feel like they are reading their own story there? Do you think I have it to? Im seeing another gastroenterologist next week wish me luck.

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



Celiac.com Sponsor (A8-M):



tom Contributor

Good luck w/ the gastro, and I gotta say, if I were you I think I'd go gluten-free no matter what the doc said.

You said you were feeling a lot better in just 3 wks!!

Not sure if I understand the part about "it wouldn't last".

lizard00 Enthusiast

If you are back on gluten, pursue testing. But, if you feel better, then stick with it. With the celiac screening through blood, it's common to have false negatives, not false positives. We have 22 ft of small intestine, so biopsies can be hit or miss.

There is also a link to wheat being problematic for sufferers of endometriosis. Which may be why some think there is a link between celiac and endo. The body systems are soo much more intertwined that we realize.

Open Original Shared Link

The other interesting thing that I found is that there has to be some mechanism with wheat with endometriosis. Wheat has been genetically modified and there are two hormones out of two, the genome. There is also problems with gluten sensitivity, and more people are becoming gluten sensitive and I find that when I

tiredeyes Newbie
Good luck w/ the gastro, and I gotta say, if I were you I think I'd go gluten-free no matter what the doc said.

You said you were feeling a lot better in just 3 wks!!

Not sure if I understand the part about "it wouldn't last".

Hi, what I ment by "It couldent last" is that even though I was feeling much better, I would have to be eating foods with gluten in it to be retested and investigated. So I know that that good feeling would have to be put on hold for a while to get more acurate results. Unfortunatly here in Australian it seems like you are not beleived you have a condition unless you are medicaly diagnosed, especially when filling out medical paperwork of any conditions you may have.

Hope this helps you understand a bit better.

Fiddle-Faddle Community Regular

Is the diagnosis and paperwork absolutely necessary?

Here in the US, as long as I am healthy, nobody cares what I can or can't eat. Nobody asks me what conditions I have, either.

I have had no trouble finding things I can eat. I make whatever non-nutritious-but-yummy things I want from scratch (like cookies, pancakes, bread, pizza, etc), but could exist quite happily on rice, veggies, fresh fruit, meat, fish, and chicken. And chocolate! (You can take away wheat, but don't take away my chocolate!)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748

    Jem68
    Newest Member
    Jem68
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.