Could It Be Something Else ?

[Guest goldie]

Hi,

I posted on the board a few months ago as I was unsure about my coeliac disease diagnosis.

I wont bore everyone with the details again but in summary :

My blood tests were positive - TTG antibody 111 ( normal 0-10);

EMA weak positive

My biopsy didn't confirm coeliac but confirmed slightly shortened villi. I have B12 deficiency and osteoporosis both of which I an being treated for. My sister has biopsy confirmed coeliac. My consultant said "it was safe to assume I had coeliac disease."

Anyway, the reason I am posting today is that I have been on a gluten free diet now for about 1 year and although most of my stomach problems have got much better I still feel extremely tired and am getting terrible bone and joint pains as well as strange feelings of numbness in hands, down my face and my toes. This week has been particularly bad.

Is there any other condition that would have a high TTG antibody level and a positive EMA ?

[aikiducky]

Not that I know of, especially since they were both positive and the TTg was pretty high. EmA is very specific for celiac. How are you being treated for the B12 deficiency? The symptoms sound like they could come from that.

Pauliina

[Guest goldie]

Hi Paulina,

I'm on 3 monthly injections. When diagnosed with B12 deficiency my level was 60 - I think the normal range was 180-800. A blood test in March showed that my reading was 400. At that point I had been having injections for about a year.

[Mother of Jibril]

Have you checked for any other autoimmune disorders? They often cluster together. Depending on what kind of joint pain you have it could be rheumatoid arthritis or lupus (SLE). RA makes you really stiff in the morning and gives you symmetrical joint pain (both knees, for example). SLE is more likely to cause aches in the small joints of your hands, feet, etc... plus fatigue and a tingling sensation. Oh yeah... fibromyalgia also causes pain, numbness, and terrible fatigue.

I think the vitamin deficiencies are a GREAT thing to consider too... they can do all kinds of horrible things to your body, but are much easier to treat.

[happygirl]

Have you had follow up bloodwork (Celiac panel) or another biopsy to see if your problems are still directly Celiac related or something else?

[Guest goldie]

Hi,

I've been tested for RA - blood test negative. Although both my mother and sister have this. I did have a weak positive ANA blood test some time ago . When I asked the significance of this I was told it didn't matter as a lot of people have this.

I am concerned that I don't have coeliac disease at all - how likely is that in view of the test results ?

[ravenwoodglass]

Hi,

I've been tested for RA - blood test negative. Although both my mother and sister have this. I did have a weak positive ANA blood test some time ago . When I asked the significance of this I was told it didn't matter as a lot of people have this.

I am concerned that I don't have coeliac disease at all - how likely is that in view of the test results ?

It is pretty certain that you do have celiac, your blood tests and biopsy as well as the resolution of your tummy issues bear that out. That does not mean that you can't have something else going on as well though. Some of us become reactive to other things after we are diagnosed. My joint pain and swelling return now with soy but that didn't happen till I had been gluten-free for a couple of years. You might want to consider dropping dairy and soy, if you haven't already, and seeing if that helps.

Something that I found helped a great deal with the fatigue was Royal Jelly from bees. If you tolerate bee products you might want to give it a try. For me it also stimulates my appetite a great deal which helps me take in more of the nutrients I need.

As already mentioned you should have your blood vitamin and mineral levels rechecked as well as having other autoimmune issues ruled out. Some of us do take longer to fully heal also. It is not unheard of for it to take a couple of years depending on how much damage was there to begin with. I hope you start to feel better soon.

[ShayFL]

EXTREMELY unlikely. That "shortened villi" and positive blood work is a POSITIVE even if your consultant doesnt think so. And you have a Sister with confirmed Celiac. Almost any doctor here in the U.S. would dx you with Celiac based on those 3 factors alone. Have you had a genetic test performed?

Also, your B12 is still quite low. If you Google B12 and do some in depth research, you will learn that many do not start recovering neurological function until they get well up past 600 and some needing to be over 800. Are you taking a daily sublingual B12 as well as your shots? It is cheap, non-toxic and can really help you get the levels up.

Also, did they test your Ferritin/Iron? These can also cause neuro symptoms.

And your Thyroid? Ditto on the neuro symptoms.

[Guest goldie]

Hi,

Last blood tests were done in March. My haemoglobin had risen from 12.8 ( previous September) to 13.5 g/dl( range 11'5 to 16.5).

My serum ferritin was 63 ng/ml (range 15 to 300).

I did buy some B12 supplements but to be honest haven't always remembered to take them.

[Guest goldie]

Me again,

Forgot to ad - Thyroid results taken in March:

Serum TSH 2.3 u/l (range 0.2 to 4.5)

Serum Free T$ 12 pmol/L (range 9 to 25)

Thanks

[ShayFL]

Think Thyroid! And you MUST get those thyroid antibodies tested.

I was severely hypothyroid with neurological symptoms at a TSH of 2.8 and I was STILL hypo with a TSH of 1. I am now .08 and finally the last of the nero symptoms are gone. I always knew when I needed to raise my thyroid meds because my muscles would start twitching. Mostly in my legs, but sometimes in my arms, abdomen and face. All day long....the twitching. Then I would up my thyroid meds and the twitching would stop after a week (sometimes a few days) of the increase. I am finally at a good point with no more twitching. Also my neuropathy is gone.

With autoimmune Hashi's the goal is to suppress the TSH to stop the attack. There is evidence that the symptoms are not a direct result of the low thyroid hormones alone, but of the disease process itself. That is why so many patients still suffer even with "normal" TSH ranges. It needs to be suppressed to stop the attack and subsequent symptoms.

gluten-free got rid of my migraines and D right away and they have never returned. But the twitching and neuropathy seem to be thyroid related because they both responded to an increase in thyroid meds.

Also, if that is a T3 reading you posted, it is in the toilet. It should be at the upper end of the range for you to feel good and not have symtpoms.

Go here:

www.stopthethyroidmadness.com

And here:

Open Original Shared Link

Autoimmune hypothyroid patients will report to their Doctors, that they suffer systemic (system-wide or body-wide) joint and muscle aches. Patients will report experiencing neurological symptoms (nervous system) and sicca symptoms (areas of bodily dryness). These types of symptoms will be experienced by these patients even with their hypothyroidism being treated by hormone replacement therapy, to correct the low thyroid hormone levels. Their doctors will many times respond to their symptom complaints, by telling their patients that these type symptoms are not thyroid disease related. When further testing is then done and no further causes for their symptoms can be found, these doctors will sometimes resort to the psychosomatic or emotional diagnosis. There is however more medical research being published, that clearly states that the disease itself that causes the hypothyroidism "Hashimoto's-Thyroid Autoimmunity", is an additional cause of symptoms, apart from abnormal hormone levels. In other words, the thyroid autoimmunity or disease process itself contributes to symptoms and may continue to do so, even after the low thyroid hormone levels from hypothyroidism, is corrected.

[Guest goldie]

Hi,

Thanks for that. The T$ should read T4 -I pressed the cap. by mistake. Is that a good or bad reading for T4 ?

[ShayFL]

T4 should be at midrange or a little higher. T3 should be upper range and can actually be a little over (for some people to feel well). You are still low.

To get a complete picture, you need:

TSH (3rd generation)

FREE T4

FREE T3

And BOTH antibodies for thyroid.

Your Ferritin is decent. If below 50 some people have trouble taking thyroid meds. Optimal Ferritin is between 70-90.

Do you have hairloss at all? Scalp, eyebrows, eyelashes, underarms, legs? This is a direct result of the low Ferritin in a lot of cases. Getting it to 70 and maintaining it for 3 - 6 months can make the hair grow back.