Coeliac Or Gluten Intolerant?

[Starla8]

Hello, I'm a newbie and I was diagnosed with Hashimoto's Thyroiditis at the start of this year.

I was referred to an endocrinologist because of my symptoms at the time as well as to be given the confirmation that what I have is Hashimoto's Thyroiditis (my doctors kept saying it was an autoimmune illness but no name given). My symptoms at the time were:

* Constipation
* Fatigue
* Migraines
* Tinnitus
* Weight loss
* Dry skin
* Dry eyes
* Joint pain
* Early/painful/heavy periods
* Depression
* Difficulty swallowing

So, my endocrinologist suggested I have a Coeliac screen and she advised me to include gluten and wheat in my diet for this. Because I don't usually cook for myself (I eat mainly ready meals like pasta and lasagne etc) I included gluten and wheat in pretty much everything. I had the Coeliac screen done a month later and the test was completely normal. So I was eating a diet of gluten and wheat at that time.

I then saw a complementary nutritionist who confirmed I was dairy intolerant (?) and said I would be better off going gluten and wheat free as well. This was in March. I eliminated all dairy and gluten and when I saw my endocrinologist at the 6-month follow-up I told her I was adhering to a gluten-free diet. Both she and the nutritionist explained that it would help my Anti-TPO antibody levels reduce.

So, this is what's happened. Despite eliminating gluten, wheat and dairy my Anti-TPO antibodies have almost quadrupled and I don't know why.

Here is the rundown of all Anti-TPO antibody test results:

January 2013 - 84 (0-34)
November 2013 - 41 (0-34)
March 2014 - 33.5 (0-34) - I was gluten-free and dairy-free at the time.
August 2014 - 141 (0-34) - I had not long reintroduced gluten and dairy back into my diet.

So have I done something wrong? I don't understand what has happened.

Symptoms are as follows:

When consuming wheat (bread) - Constipation within 15-45 minutes, usually in the morning

When consuming semolina (couscous) - Upset stomach, nausea, tinnitus, headaches, fatigue, gurgly unsettled feeling in stomach; occurs within 1 and a half-2 hours after eating
 

When consuming pasta - Bloated feeling, flatulence, fatigue within 1 hour

When consuming dairy (milk) - Constipation within 5-30 minutes, usually in the morning

When consuming cheese - Nausea and acid reflux that extends up into my gullet within 1 hour - horrible sicky taste in my mouth!!

I have gone to my doctor a number of times about what my symptoms could mean and they have said that they are not due to an intolerance of any sort and a gluten-free diet would not benefit me because that sort of diet is meant for coeliacs only and that it would only make me lose more weight.

Yeah...I'm underweight too no matter if I eat just one meal or three a day.

So is there anything I can do and is what I have gluten or Coeliac? Doctors don't seem to have any idea and I feel like I'm a lost cause at the moment.

Thanks!

[1desperateladysaved]

Welcome Starla,

 

It looks to me like you were above range on some of those tests especially while eating gluten the last time.  Maybe someone will set me straight on this.  I would make sure a full celiac panel was or is tested.   Have a biopsy if you can.  I know from reading the forum that thyroid and celiac are frequently connected along with many symptoms you listed.  However, celiac has over 300 symptoms, so of coarse other problems may share them.  Are you being treated for the thyroid problem?  I would also look for someone to give me a second opinion or someone that specializes in celiac.  You might also begin to ask more questions of the current physician in hopes they will study it out completely..

 

It sounds like a good idea for me to try the diet for some months after all your testing is done.  It may not be necessary if you don't have celiac, but is a healthy diet.

 

Dee

[cyclinglady]

Well.....I do not think diet (gluten, food intolerances) has anything to do with thyroid antibodies. Mine are always 2,000 to 4,000 with the lab range of anything over 35 being positive. I have no idea what causes them to fluctuate but as long as my TSH and is in range (between 1 and 3) I am feeling good. I have had. Hashi's for almost 20 years.

Get copies of all your lab tests. Did you get a complete celiac panel? I tested positive on only one of the celiac blood tests. If my doctor had just given me the TTG, I would have tested negative. My biopsies via Endoscopy revealed Marsh Stage IIIB which is moderate to severe damage.

If you do have celiac disease, lactose intolerance is common due to damaged villi. For now, give up all forms of dairy. You may get some relief. Keep eating gluten until all testing is complete.

Research, research, research. You are your best advocate. The University of Chicago's celiac website has wealth of information that you can share with your doctors.

To gain weight? Eat more! What is your total calorie intake? What exactly are you eating? Most of here have many food intolerances. You can try to identify them by keeping a food journal.

Hope this helps!

[Starla8]

Welcome Starla,

 

It looks to me like you were above range on some of those tests especially while eating gluten the last time.  Maybe someone will set me straight on this.  I would make sure a full celiac panel was or is tested.   Have a biopsy if you can.  I know from reading the forum that thyroid and celiac are frequently connected along with many symptoms you listed.  However, celiac has over 300 symptoms, so of coarse other problems may share them.  Are you being treated for the thyroid problem?  I would also look for someone to give me a second opinion or someone that specializes in celiac.  You might also begin to ask more questions of the current physician in hopes they will study it out completely..

 

It sounds like a good idea for me to try the diet for some months after all your testing is done.  It may not be necessary if you don't have celiac, but is a healthy diet.

 

Dee

Hi Dee, thanks for your reply.

The endocrinologist did a celiac screen - I'm not sure if it's a full panel as such. But my IgA antibodies were below 1 which meant it was negative.

Yes, I'm being treated for the thyroid problem. I take thyroxine at 50mcg at the moment.

[Starla8]

Well.....I do not think diet (gluten, food intolerances) has anything to do with thyroid antibodies. Mine are always 2,000 to 4,000 with the lab range of anything over 35 being positive. I have no idea what causes them to fluctuate but as long as my TSH and is in range (between 1 and 3) I am feeling good. I have had. Hashi's for almost 20 years.

Get copies of all your lab tests. Did you get a complete celiac panel? I tested positive on only one of the celiac blood tests. If my doctor had just given me the TTG, I would have tested negative. My biopsies via Endoscopy revealed Marsh Stage IIIB which is moderate to severe damage.

If you do have celiac disease, lactose intolerance is common due to damaged villi. For now, give up all forms of dairy. You may get some relief. Keep eating gluten until all testing is complete.

Research, research, research. You are your best advocate. The University of Chicago's celiac website has wealth of information that you can share with your doctors.

To gain weight? Eat more! What is your total calorie intake? What exactly are you eating? Most of here have many food intolerances. You can try to identify them by keeping a food journal.

Hope this helps!

Hi there thanks for your reply.

I don't know what is a complete celiac panel! My endocrinologist just said my IgA antibodies were below 1 and that is the primary marker for celiac. I didn't know there were other ways of getting tested for celiac.

My total calorie intake is about 300-400 calories because of my loss of appetite and I don't work, either, because of how ill I have been feeling. Most of the time I'm just fatigued.

But this is what I ate on Sunday:

Breakfast - Corn flakes with lactose-free milk and lemon tea

 

Lunch - 2 poached eggs with hollandaise sauce and smoked salmon

Dinner - mostly snacks (I can't remember what it was I had)

This was my boyfriend's suggestion in helping me to gain weight - so that I eat something quite filling in the afternoon which will help keep me going and then eat smaller things during the evening.

I don't think it'll work somehow.

[Starla8]

By the way I had the celiac screen a month after the endocrinologist ordered it and I didn't go as far as eat something like 1-2 slices of normal bread a day as some sites say.

Is it possible I didn't eat enough gluten to produce a positive result or that my endocrinologist didn't leave enough time for anything to show up in the test?

[cyclinglady]

Yes, it is possible, but I think (based on your earlier comments) that you eat lots of pasta dishes. That would be enough gluten, unless the pasta is not wheat-based. Still you did not get the computer celiac blood test panel.

In any case, eat more veggies and fruit to gain weight. Make sure you are not getting any gluten (like kissing your boyfriend after he downs a beer or eats a sandwich, or applying Lipstick (most contain gluten) if you continue the gluten-free diet. It has to be 100% or forget it.

Read this Newbie 101 thread. I suspect your cornflakes are not gluten free nor the sauce on your eggs.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Starla8]

Yes, it is possible, but I think (based on your earlier comments) that you eat lots of pasta dishes. That would be enough gluten, unless the pasta is not wheat-based. Still you did not get the computer celiac blood test panel.

In any case, eat more veggies and fruit to gain weight. Make sure you are not getting any gluten (like kissing your boyfriend after he downs a beer or eats a sandwich, or applying Lipstick (most contain gluten) if you continue the gluten-free diet. It has to be 100% or forget it.

Read this Newbie 101 thread. I suspect your cornflakes are not gluten free nor the sauce on your eggs.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Hi, thanks for the link.  

I only ate a lot of pasta during the gluten challenge test. But the endocrinologist didn't say how long I needed to eat gluten for so the test was done something like 3 or 4 weeks after suggesting the celiac screen instead of 12 weeks which I am seeing on other websites.

I've tried Udi's before - only the cinnamon snack bite things, can't remember their exact name - but I have noticed that my local supermarket has a free from freezer and a free from aisle (although it's right at the back of the store)

[nvsmom]

I have what appears to be Hashi's too, and going gluten-free did not do much to my TPO Ab levels either.  My TPO Ab is pretty low for Hashis (like yours) but that doesn't change the fact that I am almost on a full replacement dose of meds.  Going gluten-free did not seem to alter my medication dosage either.

 

Hi Dee, thanks for your reply.

The endocrinologist did a celiac screen - I'm not sure if it's a full panel as such. But my IgA antibodies were below 1 which meant it was negative.

Yes, I'm being treated for the thyroid problem. I take thyroxine at 50mcg at the moment.

 

Is it possible for you to get a copy of your celiac tests?  Not all doctors are aware of how to test thoroughly for celiac disease; many will run just one or two tests.

 

You said your IgA antibodies were below 1.  Was that the total serum IgA?  The total serum IgA is not actually a celiac disease test but a control test to ensure that you are not deficient in IgA which would cause false negative celiac disease tests.  IgA deficiency is common among celiac at about 5% of us - the regular population has an IgA deficiency rate of about 1 in 700.

 

The full celiac panel is:

• tTG IgA and tTG IgG (anti tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endonysial antibodies)
• AGA IgA and AGA IgG (anti-gliadin antibodies ) - This is an older and less reliable test that can miss a good half of all celiacs.

You might want to consider retesting with a proper 8-12 week long gluten challenge to ensure you had proper testing done.  If you can't get through the whole 2-3 months of gluten, it's understandable; a few people need to skip to the gluten-free diet without testing.

 

As you know, if the tests are all negative, it could be non-celiac gluten sensitivity (NCGS). If it is NCGS, you'll need to stay strictly gluten-free too, most likely for life.

 

I hope you feel better soon.

[Starla8]

I have what appears to be Hashi's too, and going gluten-free did not do much to my TPO Ab levels either.  My TPO Ab is pretty low for Hashis (like yours) but that doesn't change the fact that I am almost on a full replacement dose of meds.  Going gluten-free did not seem to alter my medication dosage either.

 

 

Is it possible for you to get a copy of your celiac tests?  Not all doctors are aware of how to test thoroughly for celiac disease; many will run just one or two tests.

 

You said your IgA antibodies were below 1.  Was that the total serum IgA?  The total serum IgA is not actually a celiac disease test but a control test to ensure that you are not deficient in IgA which would cause false negative celiac disease tests.  IgA deficiency is common among celiac at about 5% of us - the regular population has an IgA deficiency rate of about 1 in 700.

 

The full celiac panel is:

• tTG IgA and tTG IgG (anti tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endonysial antibodies)
• AGA IgA and AGA IgG (anti-gliadin antibodies ) - This is an older and less reliable test that can miss a good half of all celiacs.

You might want to consider retesting with a proper 8-12 week long gluten challenge to ensure you had proper testing done.  If you can't get through the whole 2-3 months of gluten, it's understandable; a few people need to skip to the gluten-free diet without testing.

 

As you know, if the tests are all negative, it could be non-celiac gluten sensitivity (NCGS). If it is NCGS, you'll need to stay strictly gluten-free too, most likely for life.

 

I hope you feel better soon.

 

Hi there, thanks for your reply.

 

I can’t get hold of the celiac tests. They’re not on any printouts and the receptionist told me over the phone of the result.

Yes, the total serum IgA was below 1.

I’ve had an increase in symptoms but cannot be sure if it’s celiac or Hashimoto’s flaring up.

- Mouth ulcers around the corner of my mouth

- Sore itchy spots on my fingers

- Increasing fatigue although I’m nearly 6 weeks into my Levo dose can can’t be sure if it’s my system adjusting to the medication.

[nvsmom]

Hi there, thanks for your reply.

 

I can’t get hold of the celiac tests. They’re not on any printouts and the receptionist told me over the phone of the result.

Yes, the total serum IgA was below 1.

I’ve had an increase in symptoms but cannot be sure if it’s celiac or Hashimoto’s flaring up.

- Mouth ulcers around the corner of my mouth

- Sore itchy spots on my fingers

- Increasing fatigue although I’m nearly 6 weeks into my Levo dose can can’t be sure if it’s my system adjusting to the medication.

 

Since your total IgA appears so low (hard to say without the range - I swear the labs use different ranges just to confuse us) then all of your celiac tests that use IgA (tTG IGA, DGP IgA, EMA IgA, and the old AGA IgA) will be negative - falsely or correctly so.  You would need the IgA based celiac tests (like tTG IgG) and possibly a biopsy to rule out celiac disease.

 

You might want to request a copy of those labs just to make sure you are adequately tested for celiac disease.

 

I hear you about being unsure about what disease causes what problem.  I still get confused.  LOL

[Starla8]

Since your total IgA appears so low (hard to say without the range - I swear the labs use different ranges just to confuse us) then all of your celiac tests that use IgA (tTG IGA, DGP IgA, EMA IgA, and the old AGA IgA) will be negative - falsely or correctly so.  You would need the IgA based celiac tests (like tTG IgG) and possibly a biopsy to rule out celiac disease.

 

You might want to request a copy of those labs just to make sure you are adequately tested for celiac disease.

 

I hear you about being unsure about what disease causes what problem.  I still get confused.  LOL

Thanks for this.

My endocrinologist asked a gastro to do a biopsy for celiac back in january - although they agreed to it my endocrinologist then decided against the referral to gastro, telling me she didn't want to "put me through such an unpleasant procedure".

I don't think that's a good enough reason somehow and I thought I could be sedated for it.

I go back to my doctor in a week's time regarding the Omeprazole (PPI) I've been taking for suspected acid reflux. I haven't noticed any difference, if anything my symptoms are getting worse (and I had these problems even before the gluten challenge was started!) and my doctor has said that if the Omprazole hasn't helped then I could look to being referred to a gastro or ENT.

Would a gastro be able to do a biopsy even though the endocrinologist originally said no to it?

I'll look at the IgA tests for Celiac.

[nvsmom]

The gastro is the one who would do the endoscopy in all cases.  Most are referred to the gastro by their GP; having an endo in a celiac diagnosis is a bit unusual.

 

It is a good idea to get check for celiac disease if you have Hashi's. I think I read that up to 3-6% of Hashi's patients have celiac disease, and 10% of celiacs have hashi's.

 

Most people have no problem with an endoscopy, but I can only comment second hand as I never went through it myself.  Most people are sedated during the procedure, although some opt to be awake.  Some say they have a mildly sore throat for a day or two, and I remember one person (in the last 2.5 years) who was sickish for a week after having the anesthesia, but side effects are usually very mild.

 

If you do get the endo done, you need to be consuming gluten in the 2-4 weeks prior to the biopsy, and make sure at least 6 samples are taken.

 

If you have questions about your results, feel free to bring your results back here or to start a new thread and we can try to give you some help with it.

[Starla8]

The gastro is the one who would do the endoscopy in all cases.  Most are referred to the gastro by their GP; having an endo in a celiac diagnosis is a bit unusual.

 

It is a good idea to get check for celiac disease if you have Hashi's. I think I read that up to 3-6% of Hashi's patients have celiac disease, and 10% of celiacs have hashi's.

 

Most people have no problem with an endoscopy, but I can only comment second hand as I never went through it myself.  Most people are sedated during the procedure, although some opt to be awake.  Some say they have a mildly sore throat for a day or two, and I remember one person (in the last 2.5 years) who was sickish for a week after having the anesthesia, but side effects are usually very mild.

 

If you do get the endo done, you need to be consuming gluten in the 2-4 weeks prior to the biopsy, and make sure at least 6 samples are taken.

 

If you have questions about your results, feel free to bring your results back here or to start a new thread and we can try to give you some help with it.

Thanks for explaining it all to me.

Yes, I don't know why the endocrinologist intervened with a gastro consultant. She told me they don't refer on a consultant-to-consultant basis so why she did the opposite has confused me.

This is my second week of consuming gluten, so that means I need to be on the gluten for another week until three weeks from now.

[nvsmom]

Good luck with the gluten challenge.  I hope you don't feel too poorly.  

[Starla8]

Good luck with the gluten challenge.  I hope you don't feel too poorly.  

Thanks. I hope I don't get too poorly, too.

[Solandra]

I've had Hashimoto's and never retested my antibodies.. but they were around 3500. I don't think diet affects them, I think as long as my TSH is good I feel OK.

[Starla8]

I've had Hashimoto's and never retested my antibodies.. but they were around 3500. I don't think diet affects them, I think as long as my TSH is good I feel OK.

Hi! Thanks for your reply.

I had terrible symptoms since taking up the gluten challenge and I feel like giving up. I had only been into it a week and a couple of days but I woke up with gripping stomach pains and I thought I'd make myself some chamomile tea. It made the cramps move further down but they soon came back. I then had some gluten-free toast and within 10 minutes the cramps went away. Result! I'm starting to wonder if the gluten/dairy/sugar I've been consuming over the past few days might have created a build-up of toxins or bacterial overgrowth like candida. Probably sounds a bit far-fetched but just a thought...