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

Other Issues - Where To Start?


Joni63

Recommended Posts

Joni63 Collaborator

For whatever it's worth, I react more violently to soy than gluten. You may want to try eliminating soy. It's tough because soy is in everything including cosmetics but it made a huge difference for me. Also have you eliminated all dairy or only lactose. It could be a casein problem. I got testing through enterolab.com and it helped with the guess work.

I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.


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



Celiac.com Sponsor (A8-M):



irisheyes13 Newbie

I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.

Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.

Joni63 Collaborator

Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.

Thank you irisheyes13. I never answered your question about casein...I did eliminate it totally. A couple days after I totally stopped eating it, my sinuses cleared up completely.

On a good note, had a 2 week check up with the gastro yesterday and my catscan showed NO diverticulitus - yay I'm cleared to eat nuts, seeds and popcorn again! Wooohooo!!!

irisheyes13 Newbie

Good for you Joni! It's always fun to be able to add a variety back into our diet and more importantly that you no longer show signs of diverticulitis.

I am a big fan of Enterolab testing since I finally got some answers recently after YEARS of suffering with no answers from multiple GI physicians. None ever suggested going gluten free or anything free for that matter after my endoscopy came back negative; as a matter of fact they told me to feel free to eat all the gluten I wanted after I went gluten free for 1 month. I want to also mention that I am in no way affiliated with or have any vested interest in the lab. I named the lab testing in two posts and I have been flagged as a potential spammer but I am just enthusiastic about finally feeling better.

Let me know what you think about the lamb. I have never tried it as well. I remember my grandmother cooking leg of lamb when I was a kid and hated the smell but maybe it's time to give it a try.

Joni63 Collaborator

Yes, thank you -it is a relief. Let me tell you though...he wanted to do a colonoscopy, but was refusing to do an endoscope. I figured if I was going to get one test and prep for it, I might as well have both done. He said there was no need since I know I have celiac disease and am gluten free. Funny all my symptoms were on the left side just below the rib cage...sounds like endoscope territory to me. I'm not going back there again...2 local GI's down. One day I will find a good one...or at least one that will listen. My family doctor is pretty good about listening and testing me for the tests I really believe I should have. And I have a great Nurse Practitioner I see for vitamins and nutritional advice.

I'm glad you found Enterolab and their tests. Many people on this forum have used them when doctors refused to test them or they were seeking answers. I totally understand your enthusiasm about them. Finding answers and feeling better means so much!

How long have you been gluten free? How long did it take you to find out you needed to be gluten free?

Evangeline Explorer

EnteroLab stool test for gluten, yeast, egg, dairy and soy. $99 per food. This test is the most reliable.

Then for the other foods, I suggest www.NowLEAP.com for $500. They will test over 250 foods. This test caught over 80% of my other sensitivities and their tips of starting a food diary and doing an elimination diet has helped me catch the remaining foods.

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
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748

    DottieLyn
    Newest Member
    DottieLyn
    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
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.