Can Anyone Help Me Read My Celiac Panel Results?

[monsterrr]

Hi everyone!

I'm a 25yr old female who has recently been diagnosed with Hashimoto's. I also have PCOS. For the past 6 months, I have felt terrible... I'm sure I don't have to describe it to you guys.

I was tested for Celiac right after Christmas. I've been having a ton of problems with my PCP...she missed an appointment a week ago and hasn't gotten back to me. I'm desperate to know the results!

I've attached a copy of the lab results. The second page shows a slight allergy to wheat. Can anyone help me decipher the celiac panel portion? I would be so grateful!!

[mushroom]

Hello, and welcome to the forum.

From the results posted, you do not have celiac disease. This is not to say that you do not have problems with gluten, but just that there is no diagnosable celiac disease from your blood work. Your total serum IGA was in normal range, so you do produce appropriate antibodies. Your TSH is in a good range which indicates that you probably do not have any thyroid problems.

Can you tell us more about your symptoms and why you were tested for celiac disease?

[monsterrr]

Hello, and welcome to the forum.

From the results posted, you do not have celiac disease. This is not to say that you do not have problems with gluten, but just that there is no diagnosable celiac disease from your blood work. Your total serum IGA was in normal range, so you do produce appropriate antibodies. Your TSH is in a good range which indicates that you probably do not have any thyroid problems.

Can you tell us more about your symptoms and why you were tested for celiac disease?

Hi, thanks so much for the response! And thank you to the Mod for the speedy post!

A doctor told me years and years ago that I had a sensitivity to wheat. I have been on a low carb diet twice and felt SO much better - more energy, sharper mentally, clearer skin, etc.

Over the past seven months, my health has decreased dramatically. Most significantly: my energy level. I'm so tired, all the time, and sometimes I ache all over. I sleep but don't wake rested. My hands shake, my skin is a hormonal mess, headaches/migraines, neck aches, swollen hands, heat/cold intolerance, dizziness, sinus problems....I'm sure there are a few more problems I can't remember (constant brain fog, crappy short term memory). A few years ago a had some pretty severe intestinal problems but they've pretty much cleared up.

The first thing my doctor did was test my thyroid. She thought it felt swollen, so she ordered an ultrasound also. My levels were fine but the ultrasound showed a swollen thyroid and 6mm nodules, and I was diagnosed with Hashimoto's. She said if they got to 10mm she'll order a biopsy. The next ultrasound is in March. I saw an endocrinologist today and expressed concern that I thought it was more swollen now (ultrasound was in October) because I feel pressure in my throat, but her physical exam made her think it hadn't swelled much if any. She is testing me for Graves antibodies.

I went gluten-free directly after my blood work (12/30). I had terrible withdrawal symptoms for about two weeks. The withdrawal is gone, but I still feel just as crappy.

I work in a health food store and we have a large section of gluten-free foods. I am semi-familiar with disease, to the point where I can help customers shop. I know that many people test negative for the disease but still suffer from it.

Do you think I should continue the gluten-free diet? I am considering going grain free.

Thanks so much for your time!!

[monsterrr]

I forgot to ad why I was tested for Celiac...I read there is a strong link between Hashimoto's and Celiac. I also have PCOS, which is linked to Hashimoto's. That, along with my known wheat sensitivity, was enough for me to insist on the test.

I was hoping that a gluten-free diet would lessen all of my symptoms, but so far no improvements.

[cassP]

i cant read your results on my phone. Will try to remember tomorrow.

Are you on meds for the hashimotos?? If yes- what kind and how long? It may need tweeking. I just saw my endo for the 2nd time today- and we're actually changing up my meds for the 4th time.

And how long have u been gluten free?? Sometimes it can take some time to really feel better.

Also if u have PCOS- then you're dealing with even more imbalances.

I was asking my endo about adrenal fatigue and she asked me to hold out my hands to see if they were shaking... So maybe you,re having adrenal fatigue?! and if not that- maybe u have a b12 deficiency OR Pernicious Anemia. ???

Hope some of those ideas help steer u... I hope to remember to check ur results tomorrow.. Im interested because all my numbers were pretty damn low

[cassP]

all your numbers are pretty negative for celiac and hypothyroid... BUT.. it doesnt mean you dont have gluten intolerance or hashimoto's...

seriously- if you feel better OFF gluten- then DO IT- these tests are such a mystery sometimes- and i read an article about a new test involving GLO or something??? they did a test on children- and learned that their GLO or whatever it was was high 2 years before they tested positive on TTG or Antigliadin.

also, it is definitely not textbook- but your thyroid numbers could all be perfect- and yet Hashimoto's could be starting or in effect. i asked my Endocrinologist about this yesterday- as i have a friend who has all the symptoms but perfect numbers.... my doc said she would test the TPO antibodies- and if they were off, she would consider meds.

ALSO- if you were not eating enough gluten prior to testing- that would also make them innaccurate.

[monsterrr]

all your numbers are pretty negative for celiac and hypothyroid... BUT.. it doesnt mean you dont have gluten intolerance or hashimoto's...

seriously- if you feel better OFF gluten- then DO IT- these tests are such a mystery sometimes- and i read an article about a new test involving GLO or something??? they did a test on children- and learned that their GLO or whatever it was was high 2 years before they tested positive on TTG or Antigliadin.

also, it is definitely not textbook- but your thyroid numbers could all be perfect- and yet Hashimoto's could be starting or in effect. i asked my Endocrinologist about this yesterday- as i have a friend who has all the symptoms but perfect numbers.... my doc said she would test the TPO antibodies- and if they were off, she would consider meds.

ALSO- if you were not eating enough gluten prior to testing- that would also make them innaccurate.

Hey Cass!!

I definitely have Hashimoto's. We're doing another ultrasound in 3 months to see if the nodules on my thyroid have gotten any bigger (at 10 mm she's going to biopsy...I'm only at 6.5 now). I'm on Armour Thyroid 30mg (I was at 15mg but we raised the dosage last month because of how crappy I feel and my physical symptoms). I'm going for new blood work tomorrow. She's doing a full TSH panel plus other stuff, like the Graves antibodies.

The second page of the lab work, which I didn't scan, showed a slight wheat allergy. I was gluten-free for two days, and then I decided to take the test so I gluten-loaded for four days before the test. Before those two days of gluten-free dieting, I was pretty heavy on the gluten. I don't know if they could have made a difference.

It's been almost a month, and the diet really hasn't helped me much. I'm not sure if I should continue...maybe go for two months and see how I feel? I don't think I would have had such severe gluten withdrawal if I didn't have a sensitivity to it. I guess it can't hurt to stay gluten-free for another month... I am considering going grain-free for a few weeks and seeing how that goes. One thing I am slightly worried about is eating gluten! Since I began, I've been pretty careful. A few days ago I had half a cookie, and there was no reaction.

Hashimoto's and PCOS are both autoimmune diseases, and both are linked to Celiac. I hoped gluten was the missing link, and eliminating it would make me a million times better!

How quickly did you guys feel better after going gluten-free? Do you think there is a point to me continuing?

[mushroom]

For a worthwhile gluten free test you really need to give it a good two- to three-month trial, and then challenge again with a full gluten diet. You have not even been on it long enough to have gone through withdrawal. Everybody has a different rate for feeling better depending on what kinds of symptoms they had and how long they had had them. It is possible at the end of three months that you will not notice any difference when you add gluten back in; it is also possible that you could have quite a severe reaction to it. You really should not knowingly cheat on the diet though. Has your doctor checked you for nutrient deficiencies - Vit. D, B12, folate, A, E and K, potassium, calcium, magnesium, zinc? Low levels of these can make you feel terrible and if gluten IS a problem for you they could well be low?

[monsterrr]

For a worthwhile gluten free test you really need to give it a good two- to three-month trial, and then challenge again with a full gluten diet. You have not even been on it long enough to have gone through withdrawal. Everybody has a different rate for feeling better depending on what kinds of symptoms they had and how long they had had them. It is possible at the end of three months that you will not notice any difference when you add gluten back in; it is also possible that you could have quite a severe reaction to it. You really should not knowingly cheat on the diet though. Has your doctor checked you for nutrient deficiencies - Vit. D, B12, folate, A, E and K, potassium, calcium, magnesium, zinc? Low levels of these can make you feel terrible and if gluten IS a problem for you they could well be low?

Hi mushroom!

I definitely went through withdrawal, about a week after I stopped eating gluten. I've suffered withdrawal before, when I came off a certain medication, and my body has a very specific process. Me "cheating" on the diet was just to see if I noticed any reaction to the gluten.

All of my levels came back normal, except for B and D. They were a little low, but not by much.

I'm willing to stay gluten-free for another month. If I don't see any improvement by then, I think I'll focus my energy on the Hashimoto's/Graves.

Thanks for all your help guys! You have been so helpful and I appreciate it so much!

[cassP]

Hey Cass!!

I definitely have Hashimoto's. We're doing another ultrasound in 3 months to see if the nodules on my thyroid have gotten any bigger (at 10 mm she's going to biopsy...I'm only at 6.5 now). I'm on Armour Thyroid 30mg (I was at 15mg but we raised the dosage last month because of how crappy I feel and my physical symptoms). I'm going for new blood work tomorrow. She's doing a full TSH panel plus other stuff, like the Graves antibodies.

The second page of the lab work, which I didn't scan, showed a slight wheat allergy. I was gluten-free for two days, and then I decided to take the test so I gluten-loaded for four days before the test. Before those two days of gluten-free dieting, I was pretty heavy on the gluten. I don't know if they could have made a difference.

It's been almost a month, and the diet really hasn't helped me much. I'm not sure if I should continue...maybe go for two months and see how I feel? I don't think I would have had such severe gluten withdrawal if I didn't have a sensitivity to it. I guess it can't hurt to stay gluten-free for another month... I am considering going grain-free for a few weeks and seeing how that goes. One thing I am slightly worried about is eating gluten! Since I began, I've been pretty careful. A few days ago I had half a cookie, and there was no reaction.

Hashimoto's and PCOS are both autoimmune diseases, and both are linked to Celiac. I hoped gluten was the missing link, and eliminating it would make me a million times better!

How quickly did you guys feel better after going gluten-free? Do you think there is a point to me continuing?

ok, so basically- i felt significantly better by month 2. BUT... i DO have additional food intolerances. i generally avoid corn, potatoes, high fructose fruits & veggies, peanuts & other legumes. i limit dairy kind of, and try to avoid soy. in short- i feel best very paleo.

so, ya- removing gluten did not fix all my problems- but definitely most of them.

another very important thing for you to know- is that regardless of these inconclusive blood tests- and how inconclusive your trial diet has been-> Gluten is a huge factor in Hashimoto's.. it is very likely that Gluten aggravates and keeps those TPO antibodies elevated which will continue to destroy your thyroid. at least that is my understanding.

hope everything works out for you, and your thyroid issues are easy to resolve!!!

[mushroom]

When you say your levels of D and B were a little low, do you mean below normal range? Most people feel better when their levels are mid-range, and sometimes not all the nutrients that are in the blood are available to the cells, so even if you are low normal you should supplement both B and D with a high potency B multivitamin and a D3 supplement of at least 2-3,000 iu's a day.

[ravenwoodglass]

I definitely went through withdrawal, about a week after I stopped eating gluten. I've suffered withdrawal before, when I came off a certain medication, and my body has a very specific process. Me "cheating" on the diet was just to see if I noticed any reaction to the gluten.

If you went through withdrawl that is a sign that you do need to be on the diet.

[monsterrr]

If you went through withdrawl that is a sign that you do need to be on the diet.

Hi Raven....I actually had a conversation with a few people at work about that. I can't imagine having actual withdrawal symptoms if I wasn't allergic or intolerant. OK, so you just made up my mind...I'll give the diet at least another month. Thank you!

I am supplementing with 4500iu of vitamin d and a mega dose b complex.

You guys rock!

[ravenwoodglass]

Hi Raven....I actually had a conversation with a few people at work about that. I can't imagine having actual withdrawal symptoms if I wasn't allergic or intolerant. OK, so you just made up my mind...I'll give the diet at least another month. Thank you!

I am supplementing with 4500iu of vitamin d and a mega dose b complex.

You guys rock!

It might be a good idea to add in a sublingual B12 as you may not be able to absorb the B12 from a swallowed pill.

[monsterrr]

It might be a good idea to add in a sublingual B12 as you may not be able to absorb the B12 from a swallowed pill.

Oh wow, good call. I've been so concerned with taking whole food supplements that I forgot all about the digestive and absorption issues! *face palm*

Well, I'll be shopping at work tomorrow

Thanks everyone, especially you Raven....can't tell you how much I love this forum!

[ravenwoodglass]

Oh wow, good call. I've been so concerned with taking whole food supplements that I forgot all about the digestive and absorption issues! *face palm*

Well, I'll be shopping at work tomorrow

Thanks everyone, especially you Raven....can't tell you how much I love this forum!

If your taking whole food supplements make sure the don't have wheat or barley grass. Those would not be safe but can still be labeled gluten free so read all ingredients.

[campbell7]

Hello,

I have Hashimoto's and I did not start to feel better until I was on 120 mg of Armour, my endo is basically looking only for TSH and mine last Dec was 0.08 and he told me to decrease it to 60 mg,after that I started to feel bad again, cold hands and feet, choking feeling in my throat, fatigue, etc.... after reading STTM book and the aproach to treat hashimoto's, I decided to go back to 120 mg and started to feel better again and wiil switch my endo for someone that can look beyond just the THS

Open Original Shared Link

I'm too figuring out if I have Celiac, I got an incomplete celiac panel and was negative perhaps because I'm not eating enough gluten, so I will probably do the enterolab test next, also I have an appt with an enterologist next month, not sure if I will make it, since eating gluten really makes me feel yucky.

My daughter was also tested and we are waiting for her results as well.

I don't have PCOS but I' dealing with non stop spotting all the time, not sure if it is my Thyroid or the gluten.

So I hope this helps

[cassP]

Hello,

I have Hashimoto's and I did not start to feel better until I was on 120 mg of Armour, my endo is basically looking only for TSH and mine last Dec was 0.08 and he told me to decrease it to 60 mg,after that I started to feel bad again, cold hands and feet, choking feeling in my throat, fatigue, etc.... after reading STTM book and the aproach to treat hashimoto's, I decided to go back to 120 mg and started to feel better again and wiil switch my endo for someone that can look beyond just the THS

Open Original Shared Link

I'm too figuring out if I have Celiac, I got an incomplete celiac panel and was negative perhaps because I'm not eating enough gluten, so I will probably do the enterolab test next, also I have an appt with an enterologist next month, not sure if I will make it, since eating gluten really makes me feel yucky.

My daughter was also tested and we are waiting for her results as well.

I don't have PCOS but I' dealing with non stop spotting all the time, not sure if it is my Thyroid or the gluten.

So I hope this helps

hey- im on Armour 60mg right now... but on hard days at work- i take another 5mcg Cytomel in the afternoon (dont tell my endo)... its just on HARD days- cause i know the 60 is not enough... but im trying to sit tight for my bloodwork in 2 weeks.

concerning your story- might a pill in between 60 & 120 be a good idea for u?? or do they not make it?? i know they make 30mg.... hhmmm... im just in the beginning of my "getting the labs & meds right"... my last TSH was at 2.44 and that was when i was on Synthroid & Cytomel at a higher dose than the ARmour... i have no idea why she had me go down in dose... i am feeling it big time, and cant wait to be given permission to up it

how long have u been dx? cold hands- you sound like classic hypo... unfortunately i have both hyper & hypo- so its hard to judge my symptoms.. all i know is i still feel like crap

sorry to blab

[nora-n]

the 5 extra cytomel will lower your TSH so that you can have problems getting an increase of the Armour dose....t3 lowers TSH quite a lot.

[cassP]

the 5 extra cytomel will lower your TSH so that you can have problems getting an increase of the Armour dose....t3 lowers TSH quite a lot.

i know you're right.. and im concerned and trying to hold tight- but some days im absolutely dying