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

Diddo On The Neg Test Results

Sandyo

Recommended Posts

Sandyo Apprentice
Sandyo
Posted

I will try to make this as short as I can...but would like some feedback. Both Doctor's I went to are telling me I do not show symptoms of gluten intolerance or Celiac Sprue and my blood test (5 anitbodies) came back neg. I don't know the numbers, the Doc said two are a little "high" but not enough for intolerance or Celiac.

I've been lactose intolerant for 6 years, hit me all of a sudden. My mother is allergic to many meds, milk, wheat, corn and soy. Has always had problems with foods. My sister is now having the exact same symptoms as I am.

Started 2 months ago. Nausia after eating, stomach cramps, bloating, excessive gas, hard extended stomach, gained 8 pounds can't get off even with running 25 miles a week and lifting weights, dull headaches, sharp pain right rib cage, constipation for years (when I do go they are hard, and very dark, usually little tiny balls and I have to strain a lot) even though taking 3 stool softners a day and one with laxative, had a migrain the other day (haven't had one for years), body aches, floating stools, feels like my heart is beating funny sometimes, rash that comes back after taking everything including acutane (not itchy or red but not like acne, Dermatologic is stumped, did a biopsy last week), bruise very easily, and sick twice within the month, stomach ache (threw up) and a cold for 5 days (and I'm never sick...I mean NEVER sick), don't sleep well but always tired.

I thought for sure I knew what was wrong. I went off gluten for 3 days and felt better then had to eat some for the blood test. Ate some for 3 days before the blood test so I think that was enough. I've been gluten free for about a week now and feeling better and I ate Frosted Flakes this morning (though I saw they were ok) and am not feeling well today.

My questions are: Does it sound like I'm gluten intolerant? Is being intolerant not as dangerous as having Celiac disease? And could it be that I just need to limit my gluten? Or is it all or nothing?

Thank you for your comments.

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

Celiac.com Sponsor (A8-M):


wolfie Enthusiast
wolfie
Posted

Sorry you aren't feeling well. It is an all or nothing thing...if you are gluten intolerant, only a gluten-free diet will help you feel better. Same with Celiac....life long adherance to a gluten-free diet. To my knowledge Frosted Flakes are not gluten-free. You can still have gluten intolerance and/or Celiac with negative blood work. If the diet makes you feel better, stay on it.

Hope you feel better soon!

jerseyangel Proficient
jerseyangel
Posted

Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing :D

Sandyo Apprentice
Sandyo
Posted
  • Author
Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing :D

Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

jerseyangel Proficient
jerseyangel
Posted

Yes--by all means tell them you would like a copy. (notice I didn't say ask them for a copy) :D

ravenwoodglass Mentor
ravenwoodglass
Posted
Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

It's kind of like being a little bit pregnant <_<:(:huh:

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

Sandyo Apprentice
Sandyo
Posted
  • Author
It's kind of like being a little bit pregnant <_<:(:huh:

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

Is it either high or not high or are there levels like Colesteral testing?

Thanks, I will get a copy tomorrow. My one doctor wouldn't even test me. He said go off gluten and if your symptoms go away then I'll test you. After reading just a few posts, I realized he had not idea what he was talking about.

Thanks for your help!!!

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

Celiac.com Sponsor (A8-M):


DonnaD Apprentice
DonnaD
Posted

Do get copies of your test results. My doctor told me many of mine were fine and they actually were boarderline. I did Enterolab because I had been 95% gluten-free for ages (thanks to all here for the advice). My little girl told me the other day that I know far more than any doctor about these problems, ( I don't I'm still learning but it is nice to be appreciated LOL ) she is 11 and has gained 6lbs and 2" height on the gluten-free diet. I have had to buy her a whole new wardrobe in age 9/10 (she was in age 8) its so exciting to see her getting some colour in her cheeks and energy to do things other kids take for granted. All I can say is 'don't get mad, get even'. get all your test results and look them up online or post them here. Western medicine is geared towards poisons (antibiotics) etc and we need to learn from traditional medical systems ( i.e. chinese) to balance our diet/systems. I'm 42 and only just finding out why my health sucks, i'v seen 30+ doctors, 5+ consultants, 5+ physio therapists, 1 chiropractor, 1 oestopath. 1 irridologist (best £40 I ever spent), 1 traditional chinese doctor. The most important thing I ever did for my health was ask questions here and listen to/research the answers.

Good luck

D

Archived

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

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


  • Member Statistics

    • Total Members
      131,544
    • 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
      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.