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

Questions About Celiac Testing And Synthroid


rfamilyof8

Recommended Posts

rfamilyof8 Newbie

Hi All, I was just diagnosed over the summer as being gluten intolerant by my chiropracter who put me on a specific carbohydrate diet. Just last week I received the results of my endoscopy from my GI doc. He did a biopsy of the small intestine and also did a blood test to check for Celiac Disease. They both came back ...negative. He did tell me that I was gluten intolerant and I should still stay away from foods containing gluten. Does any one know if you could still have Celiac Disease even with negative test results??? I get really sick when ingesting gluten and have heard different stories about the accuracy of the biopsy and blood tests to check for Celiac.

I also wanted to know if anyone has heard of Synthroid not being gluten-free. I called the maker (Abbot Labs)of Sythroid yesterday to verify this and they told me that an outside source tested the drug and that it is supposed to be gluten-free, but they could not give me a definite answer. I am still having symptoms of constipation and insomnia even though I am on a gluten-free diet. Any info would be helpful. Thanks.

Amy


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

Hi All, I was just diagnosed over the summer as being gluten intolerant by my chiropracter who put me on a specific carbohydrate diet. Just last week I received the results of my endoscopy from my GI doc. He did a biopsy of the small intestine and also did a blood test to check for Celiac Disease. They both came back ...negative. He did tell me that I was gluten intolerant and I should still stay away from foods containing gluten. Does any one know if you could still have Celiac Disease even with negative test results??? I get really sick when ingesting gluten and have heard different stories about the accuracy of the biopsy and blood tests to check for Celiac.

I also wanted to know if anyone has heard of Synthroid not being gluten-free. I called the maker (Abbot Labs)of Sythroid yesterday to verify this and they told me that an outside source tested the drug and that it is supposed to be gluten-free, but they could not give me a definite answer. I am still having symptoms of constipation and insomnia even though I am on a gluten-free diet. Any info would be helpful. Thanks.

Amy

There are many who believe (myself included) that Gluten Intolerance is Celiac disease before it's caused a lot of damage to your intestines. The symptoms can be every bit as bad.

Synthroid cannot be guaranteed gluten free, and there are members here who think they have been glutened by it. I personally wont take a chance, and asked for Levoxyl. it is definitely gluten-free, and I have no issues with it.

Either Celiac or gluten intolerance, the cure is a life long gluten free diet.

  • 2 weeks later...
Berkana18 Newbie

Hey there! I am gluten intolerant and celiac negative. (Kinda like saying I wear glasses but I'm not blind yet.) The way it was explained to me, the effects of the intolerance, if not kept in check by diet, could cause a progression from intolerance to true celiac disease.

Amongst my list of facinating debilitating, but not terminating conditions, is Graves disease. My thyroid was destroyed via radiation and I have been on Synthroid since 2000. I was not diagnosed with pre-celiac until 2005. I have had no gluten issues with name brand Synthroid. When I asked about it I was told the product was clean. FEW pharmaceutical manufacturers will guarantee much of anything these days since they often subcontract manufacturing and cannot exert much control.

The biggest piece of thyroid advice I can give you is NOT to change your thyroid med WITHOUT the advice of your endo. For example -- I am not to accept a generic or different version of synthetic thyroid (such as Levoxyl) because they are not the best choices for me. And I had to stomp my little feet and scream long and loud when my prescription service sent me some other thyroid med they said was cheaper and "just as good". I had to take it for a week while they sent the good stuff. I was woowooy, constipated and cranky. Yuck!

Good luck.

Gemini Experienced
The biggest piece of thyroid advice I can give you is NOT to change your thyroid med WITHOUT the advice of your endo. For example -- I am not to accept a generic or different version of synthetic thyroid (such as Levoxyl) because they are not the best choices for me. And I had to stomp my little feet and scream long and loud when my prescription service sent me some other thyroid med they said was cheaper and "just as good". I had to take it for a week while they sent the good stuff. I was woowooy, constipated and cranky. Yuck!

This is a bunch of baloney perpetrated by drug companies to keep people on Synthroid and paying more money for their meds. I have been hypo-thyroid and on thyroid hormone for close to 20 years

and refused Synthroid in the beginning because of the cost difference. Levoxyl is the same med as Synthroid, only it's generic form and works extremely well for most people who take it. There are also many other good options like Armour and compounded thyroid hormone, which are great because they can be taylor made for gluten-free people.

The only 2 issues are getting the dose correct and figuring out if you need to take a combo T3/T4 hormone. Everyone's different in how they metabolize meds so if you can get the dose figured out

and whether you need to supplement with both hormones, any of the other types will work fine.

My cousin works for Abbot, and as much as I love her, I don't like their selling tactics. Abbot has kept their product expensive and tried to convince people that only Synthroid works well. I'm living proof that's a bunch of baloney.

Berkana18 Newbie

This is a bunch of baloney perpetrated by drug companies to keep people on Synthroid and paying more money for their meds. I have been hypo-thyroid and on thyroid hormone for close to 20 years

and refused Synthroid in the beginning because of the cost difference. Levoxyl is the same med as Synthroid, only it's generic form and works extremely well for most people who take it. There are also many other good options like Armour and compounded thyroid hormone, which are great because they can be taylor made for gluten-free people.

The only 2 issues are getting the dose correct and figuring out if you need to take a combo T3/T4 hormone. Everyone's different in how they metabolize meds so if you can get the dose figured out

and whether you need to supplement with both hormones, any of the other types will work fine.

As I said in my original post, Synthroid is just fine by me. For me Levoxyl isn't. And I would never advise anyone to mess around with their thyroid meds without the assistance of a competent endo. The drug companies aren't the evil monsters you make them out to be. Yes, they are out to make a buck, but there are differences between brands and generics. I am living proof of that. BTW, I'm not just hypothyroid. My body makes none at all, so for me this is a life and death issue. As you said everyone is different...

Gemini Experienced

As I said in my original post, Synthroid is just fine by me. For me Levoxyl isn't. And I would never advise anyone to mess around with their thyroid meds without the assistance of a competent endo. The drug companies aren't the evil monsters you make them out to be. Yes, they are out to make a buck, but there are differences between brands and generics. I am living proof of that. BTW, I'm not just hypothyroid. My body makes none at all, so for me this is a life and death issue. As you said everyone is different...

I never said that drug companies were monsters. If you re-read my post, I said their selling tactics weren't on the up and up. They absolutely try to convince doctors and patients that only Synthroid works the best and Levoxyl should not be used. The vast majority of doctors that I went to pushed Synthroid over everything else.....especially the more natural medications like Armour. If a doctor pushes a drug to the point of being obnoxious about it, that should ring a warning bell.

Anyone who is thyroid compromised has a life and death issue, that is not just reserved for those who make less than others. Mine is pretty compromised also and is a bigger problem than having Celiac. Treating celiac is easy, balancing a low thyroid is not. Generics are the exact same med as the brand names are but people may respond differently to them. Synthroid is also questionable on the gluten-free front...the company will not guarantee their product gluten-free but many others will or can be compounded to make them gluten-free. If you also need to be taking T3, you won't get that in Synthroid or Levoxyl, you'll have to go to Armour or a compounded med or take a T3 supplement, which are also made by the leading drug companies.

If you are happy with Synthroid, that's fine but there are many other meds which work beautifully and won't cost as much as Synthroid.

one more mile Contributor

Perhaps you have another food intolerance. I react the same way when I eat soy. and many gluten free foods are soy based.

I take 137 of Levoxyl and do not have problems with it. But your doctor needs to figure that out. I do not know the difference but my doctor said that for me Levoxyl would be better.It is less then 8 bucks a month at cvs.

Some medications tell you to call in with each new lot number because as the price of fillers changes they may switch from one to another.


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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.