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

Suspected Celiac, And Feeling Very Lost And Frustrated!

book-worm

Recommended Posts

book-worm Apprentice
book-worm
Posted

Hi all.

I

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

Celiac.com Sponsor (A8-M):


laurie9141 Rookie
laurie9141
Posted

Hi all.

I’m new hear, and very new to celiac and anything to do with it, so please forgive the long post.

I’m a 24 year old Uni student, I’ve never had any digestive problems that I can think of, unless you count never really putting on weight. About 8 months ago I had a really bad flue, took me weeks to get over it. Ever since then I’ve had diarrhea, nausea, stomach cramps and just generally feeling unwell.

The last 2 or 3 months I’ve started to get bone and muscle pain, headaches and just recently mouth ulcers. All these symptoms seem to get better and worse, but never go entirely. I’ve had a series of tests including ultrasound, CT scan, a range of blood tests including the blood test for celiac, and everything came back negative.

Haven’t had a biopsy done, no one thinks it’s necessary.

My doctor told me it was probably IBS, there was nothing more he could do and just to except it and learn to live with it.

I disagreed with him and went to see a new doctor about 2 months ago, and she said because I didn’t seem to have the usual IBS food trigger’s, (spicy food, coffee ect) I should try cutting out gluten even though the blood test was negative, and see what happened.

She said it could take a while to know if the gluten-free diet was working, I’ve been gluten free for about 5 weeks now, and I think it’s making a difference. but I can’t be shore, I’m still having good and bad days.

At this point I’m just slightly lost, confused and frustrated, I don't no weather to stick with it or if I'm waisting my time.

my doctor doesn’t seem to have answers, and none of my family have anything like this, so they all agree with the first doctor “it’s IBS, just learn to live with it” . Easy for them to say!

So, after that saga, (Smile.

What do you guys think, Does this sound like celiac? And should I be noticing improvement by now? Or is five weeks not long enough to know if the gluten-free diet will work.

Basic questions I know, but no one seems to be able to answer them, and numerous searches on Google has just left me even more confused!

Hi! you answered your own question! you dont want to waste your time ans probably money, and social life eating expensive stuff.. that no restaurant cooks and no one in your fam understands. so get the gene test, get the biopsy... call GI drs until you find one that will listen and do it... if Celiac is not found, then move on from there.. but at least exhaust the diagnosis All the rest of the drs will order andtidepressants, tell you its anxiety, or order a whole lotta other drugs and will spend years wondering ... so get it done... You have to take care of yourself...You know your own body.. Prayin for your strength and wisdom...

GFinDC Veteran
GFinDC
Posted

If you have been gluten free for 5 weeks, the biopsy would not be a reliable test. You could get the Enterolabs test done, even after being off gluten for a while.

If you think the gluten-free diet is starting to help, that means something right? It is not an instant cure all though, It takes time for your body to heal. It also takes to time to learn to avoid all the hidden gluten in foods, drinks, medicines, vitamins etc.

A good way to start is to not eat any processed, package foods. Make all your own foods from scratch at home and use only single ingredient spices. Don't give up just because you didn't get better right away. It is not unusual for people to need 6 months or more to get better. You may also discover additional food intolerances as you go. Soy, nightshades, dairy are all common for intolerances us.

You can have gluten intolerance without having celiac disease. Gluten intolerance may not show up on tests, but it should still respond to the gluten-free diet.

reeetz Rookie
reeetz
Posted

Hi book-worm. Well, what you described sounds almost exactly like what I have been going through as well. I had the same symptoms after some food poisoning a few months ago, and they just wouldn't go away. I too had a CT scan, ultrasound, even a colonoscopy. I just had the celiac blood test done last week which came back as negative, but I had also been on the diet for almost 6 weeks at the time so who knows.

The only difference for me is that the diet has made a huge improvement on my health. Huge improvement. I still don't feel completely "normal" but the difference is amazing. When I first started on it though I was still eating dairy and still felt sick more. Since taking dairy out(which is almost harder than the gluten for me)I have felt so much better too. Just try different things as GfinDC has mentioned to see if other things could be the problem. Good luck and keep us posted on how it goes.

book-worm Apprentice
book-worm
Posted
  • Author

Thanks guys,

I had been feeling fairly reasonable for the last three weeks, but last night and today feel shocking! Shaky, Nausea and diarrhea, no headache and very little bone and muscle pain though, so that

Archived

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

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


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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
      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.