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

So Confused


blc40

Recommended Posts

blc40 Newbie

I have gotten my biopsy results back today and they came back negative for Celiac ! I am so confused I had bad stomach pain and anxiety for a month for test . some oily loose stool after eating certain foods, most noteably corn ctrach in gravy sent me right into the bathroom and up all night in pain. After biopsy i went gluten free as a trial and have had no pain in almost a week and no trips to the bathroom ! any insite as to what may be allergic to ot intolarant of ? I go back to the Dr in a few weeks .


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
After biopsy i went gluten free as a trial and have had no pain in almost a week and no trips to the bathroom ! any insite as to what may be allergic to ot intolarant of ? I go back to the Dr in a few weeks .

Yea, gluten. The biopsies can tell you conclusively that you do have celiac but they can not tell you for sure and for certain that you don't. The wrong area may have been biopsied, damage can be patchy. There are also changes that are seen before the villi are totally destroyed that some doctors don't recognize and some doctors will not diagnose until the villi are completely destroyed. It seems your body likes you being gluten free and that is really the best test of all. I would continue on the diet and report your good progress and relief of symptoms to your GI when you see him for the follow up.

sbj Rookie

If it turns out that corn starch is a problem for you - and you really like your gravy - I suggest trying sweet rice flour. I had never used it before going gluten free but it is a great thickener for gravies. Use it the same as flour, so saute a bit in a pan with oil/fat/margarine/butter and then add your broth and heat until thickened. Stuff works better then regular flour for sauces!

blc40 Newbie
Yea, gluten. The biopsies can tell you conclusively that you do have celiac but they can not tell you for sure and for certain that you don't. The wrong area may have been biopsied, damage can be patchy. There are also changes that are seen before the villi are totally destroyed that some doctors don't recognize and some doctors will not diagnose until the villi are completely destroyed. It seems your body likes you being gluten free and that is really the best test of all. I would continue on the diet and report your good progress and relief of symptoms to your GI when you see him for the follow up.

thanks so much , i actually cried when she said the biopsy was negative because i felt so good all week i knew i had to finally have found the answer ! I had so many of the symptoms and it was a long month of pain and anxiety attacks etc. that all went away when i switched. and my bms were regular.

i am going to try to add a few things back in and see how i feel i was also thinking of a soy intolerance ? I will try going back for a few days and see how ifeel if not i am going back gluten free till my follow up.

ravenwoodglass Mentor
thanks so much , i actually cried when she said the biopsy was negative because i felt so good all week i knew i had to finally have found the answer ! I had so many of the symptoms and it was a long month of pain and anxiety attacks etc. that all went away when i switched. and my bms were regular.

i am going to try to add a few things back in and see how i feel i was also thinking of a soy intolerance ? I will try going back for a few days and see how ifeel if not i am going back gluten free till my follow up.

This is just my opinion, I am not a medical professional but I would not add gluten back in at this point. You have seen a definate resolution of your symptoms and I would give yourself a bit longer. In a couple of months if you still have doubt then challenge with something like cream of wheat 3 times a day for a week, or until you react. I think your smart to also suspect that soy might be an issue. The best thing you could do right now is to just avoid it and then when you have healed a bit add it back in to your diet and see if any problems crop up. It can also be a good idea to eliminate or greatly restrict your dairy intake at first, if it seems to give you issues. Soy and dairy are the two most likely things it seems for us to react to if we react to gluten but everyone is different.

To heal fastest go with whole unprocessed foods as much as you can. If you live somewhere with a Wegmans they label all their gluten free stuff and Walmart also does. Your in a great place for support and information. I hope you continue to improve.

gfb1 Rookie

i agree with rwg's advice. however, may have an additional suggestion.

if you suspect that you have more than one food allergy/sensitivity then you (imho) you might try a systematic approach to your diet. start by going one week with a simple allergen-free diet.

only rice/potatoes/banana. there are examples of this all over the place; and if you contact a decent registered dietician (NOT someone with a shingle that says 'nutritionist'...) they can help you with a more interesting menu.

add ONE food back at a time (again, one week per food or is it one food per week??) ... whether corn/soy/eggs/strawberries etc... and see how you feel.

i also agree with the 'processed' food comment (at least until you have more experience). while ingredient/allergen labeling has improved over the last 2 yrs, there are still issues of mislabeling and cross-contamination (my wife's biggest problem food is 'soy sauce', who would have thought that the primary ingredient in most SOY sauces is WHEAT!! and few restaurants can tell the difference....)

ravenwoodglass Mentor
add ONE food back at a time (again, one week per food or is it one food per week??) ... whether corn/soy/eggs/strawberries etc... and see how you feel.

Good suggestion.

It is one food per week at least 3 times a day in as pure a form as possible. Intolerances can at times need a build up period of 3 days to a week before the reaction is felt.

Another person who can help with an elimination diet is an allergist, which some folks may find is easier to get the insurance company to cover. Do call and ask before the appointment if the doctor can help with the elimination diet as many only work with 'true' allergies.

They can give a person a starting diet of foods that are the least likely that they will be reacting to. They will also design the diet so that it is nutritionally balanced. It is a process to go through and quite timeconsuming but it can definately be beneficial.


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,365
    • Most Online (within 30 mins)
      7,748

    candiceelse08
    Newest Member
    candiceelse08
    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

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.