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

People Think I Am Crazy

mich56

Recommended Posts

mich56 Newbie
mich56
Posted

Perhaps I have come here to vent a little, or get some advice, or just discover if it could be possible for me to have celiac.

To give a little background on myself, I will do it in point form:

1995 (I was 15) - discovered I was anemic...but never told what to do, nor take any iron supps.

1997 - got really sick, but didn't know what it was. Always tired, sore, bad digestion issues, blood in urine, high protein in urine etc

1999 - diagnosed with Interstitial Cystitis (after two years on digestion problems and blood in urine - picture the color of cranberry juice in the toilet)

2001 - many trips to the doc for extreme fatigue and depression but no official diagnosis

2003 and 2004 - two c-sections for two beautiful babies

2005 - back into docs office for depression, gut issues, blood in urine, cold, sore joints and muscles. All tests came back normal except low in iron...went to Naturopath, found out I am allergic to corn,

2006 -more digestion issues (bloating, gas, pain, brain fog, fatigue) the list goes on and on...and has continued..

Jan 07 - had what I thought was a gallbladder attack - went in, had some tests done (ultrasound and x-ray)...turned out to be a severely deformed and inflammed duodenum. Thought it was an ulcer. Went to the Gastroenterologist, has a scope done...came back normal!!!!!!!!!!

I continue to have digestion issues, gas, bloating, depression (on again, off again type thing), always have loose stools - and actually in the past ten years I have probably only ever had 3 or 4 solid movements-, migraine headaches (which only started recently), acne (again, only recently), swelling of my hands and feet, joint and muscle pain...I think that about sums it up!

The reason I have come here as well, is because I attended a semiar at my work (BTW - I am a holistic Nutritionist - which I went and learned about because of all my issues) on Sunday and was thinking that it could be possible for me. I don't know of any family member with celiac, however, with all the symptoms that present itself with celiac, I can say that many people in my family could possibly have it as well.

So any advice, thoughts, anything would be appreciated! Thanks for reading :)

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Stay on a normal diet and start the testing.

When testing is done and even if the tests came back "normal" I would still try a gluten free diet.

L.

gfpaperdoll Rookie
gfpaperdoll
Posted

Wow, seminar at work??? what did they say? Did they mention celiac? How large a company? I have just been thinking about the huge impact that this could have on companies, a huge savings in medical expenses, as I see all the people at my company with symptoms...

read the forum all the new people posts about getting tested & then see what you want to do. If you give reasons for pro or con then we can have an idea of what you want to do & can give you some guidelines - or at least our opinions ;)

elye Community Regular
elye
Posted

You have nothing to lose by getting the celiac blood panel done. There can be false negatives, so a negative may be meaningless...but a positive means you have it for sure. The symptoms you have described would certainly make me suspect gluten intolerance. Stay on here, and read, read, read! Lots of great people on here, with all kinds of advice and support! Good luck.smile.gif:)

mich56 Newbie
mich56
Posted
  • Author
Wow, seminar at work??? what did they say? Did they mention celiac? How large a company? I have just been thinking about the huge impact that this could have on companies, a huge savings in medical expenses, as I see all the people at my company with symptoms...

read the forum all the new people posts about getting tested & then see what you want to do. If you give reasons for pro or con then we can have an idea of what you want to do & can give you some guidelines - or at least our opinions ;)

The seminar at work I was actually working for - so I got paid to attend. The company is called Choices Markets - offering both conventional and organic foods and health products. I currently work in the Nutrition and Health Care departments. We put on seminars for the general public...ranging from detox to supplements and the one on Sunday was exclusively on Celiac...with a store tour of all the gluten-free items we have. It was 4 hours long, and it was great! Being a nutritionist, I haven't come across or worked with anyone with celiac, so I never found a real reason to do the studying on it. Even in my Nutrition school, it was touched on, but not in great deal. So it was somewhat of an eye-opener for me.

mich56 Newbie
mich56
Posted
  • Author

Thanks everyone for your replies. I definitely will be asking my doc for some blood work to see. Even if it comes back neg, I will persist (my doc has known me as long as I have had these issues) and have them do a biopsy - or perhaps the gene test? I will have to see when the time comes. I will be going in to the doc on the 13th so I will be asking for everything then. I just want to know exactly what I should be asking for. tTG, CBC, ferritin...anything else? I was also thinking of getting my T3 & T4 done (the "real" test) not just the TSH.

mich56 Newbie
mich56
Posted
  • Author

So to add to my title of this thread - MY DOC NOW THINKS I AM CRAZY! She said that I am fishing for answers that aren't there. I have Interstitial Cystitis that is why I have IBS, or at least that is what she tells me. And all my other symptoms come from my IC.

I did ask her how many celiac patients she has. But that pissed her off a bit. She has a sister that is celiac and was since she was 3 so my doc KNOWS all about celiac. However, in our conversaton, I am not sure that she does. She said that the biposy I did in June showed no abnormalities (they took "a couple" of samples) and definitely no celiac. She also told me that it isn't possible to get the disease later on in life. That even if my blood work came back negative that I wouldn't and couldn't get it.

All my research on this and the seminar that I went to tells me otherwise.

I don't know anymore. Perhaps I am crazy! She just made me feel like poop. Like all the other people in my life that say I am full of it and looking for attention!! F**k people, this is real!! :angry: I have felt like this for most of my life...and it ain't normal! :(

Oh, and I did get some blood taken today - she is looking at ttg (I believe) and ferritin and B12...

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

Celiac.com Sponsor (A8-M):


Tranquillity Rookie
Tranquillity
Posted
I don't know anymore. Perhaps I am crazy! She just made me feel like poop. Like all the other people in my life that say I am full of it and looking for attention!! F**k people, this is real!! :angry: I have felt like this for most of my life...and it ain't normal! :(

I KNOW! I know exactly what you mean, and it is annoying beyond words!!! :angry:

From what I know about this, which is very little, you CAN actually be gluten intolerant without celiac, that is, feel crap when eating gluten without visible intestinal damage.

On the other hand, there are plenty of other intolerances/allergies than can do bad stuff to you, obviously.

Sorry, but I don't have much meaningful to add. I just had to reply to the stuff i quoted because that's pretty much the sum of everything I think these days.

nutralady2001 Newbie
nutralady2001
Posted

Sorry you are going through this mich. I finally have a DX of Coeliac when I had a biopsy for something completely different. I worked out I have had it for 48 years and been mis-diagnosed with IBS / Inflammatory Bowel Disease

Don't give up, hang in there.If all else fails go gluten-free and stay gluten-free.......................celiac disease is auto-immune, are there any other auto-immune diseases in the family? My history of a/i disease in the family goes back 5 generation mainly RA and Type 1 diabetes, I drew the Hashimoto's Disease ( thyroid) and celiac disease straws.

kathymacn Newbie
kathymacn
Posted
She also told me that it isn't possible to get the disease later on in life.

I was diagnosed at age 65. Had no symptoms other than elevated liver enzymes. I had just been through a very stressful situation which apparently triggered my celiac disease. Tell that ignorant fool to get herself educated about celiac disease and stop giving patients inaccurate, false information.

mommyagain Explorer
mommyagain
Posted
She has a sister that is celiac and was since she was 3 so my doc KNOWS all about celiac.

I'm going to play devil's advocate and defend your doc a little here... I'm assuming your doctor is at least 30 years old. Which means her sister is probably at least 20? If she was diagnosed at age 3, that was 17 years ago. Not very much was known about celiac then (at least not in the US). There has been a LOT of research just in the last 10 years. If your doc is basing her knowledge of celiac on her sister's experience, she needs an update (she probably learned next to nothing about it in med school).

I just had someone email this Open Original Shared Link to me today. I don't know how accurate some of it is, but it includes an interesting time-line (pages 24-25) of celiac disease and gluten sensitivity. I don't know how to go about educating your doctor, but several of the references listed are in respected medical journals.

nora-n Rookie
nora-n
Posted

The British Medical Journal even has articles about old people and obese people getting celiac, both of these groups are quite large, like 20-30%of all diagnosed.

marciab Enthusiast
marciab
Posted

I'm 52 and was just diagnosed this year. The GI who did my EGD told me that he just diagnosed an 80 year old man earlier that year who'd been sick all of his life.

FWIW: I had problems with my GP after eliminating gluten and having success with my health. :huh: So, unless this doctor gets a clue, I'd suggest you find another doctor who is open minded about all of this. You may need someone who is familiar with the problems associated with undiagnosed or untreated celiac. I did and it certainly simplified my life.

Marcia

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,545
    • 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):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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
      Protein or fat?

      By Jsingh · Posted

      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
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      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
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      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
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      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.