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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    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
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.