To Test Or Not To Test!

[Brinutbutter]

Hello. Im here looking for some advice.

Im 25 and have been a pretty sick kid my entire life. I saw countless doctors when I was younger- GI, endocrinologist, internal medicine, therapists, physchologist- you name it. The result was take out my gallbladder, my tonsils, and send her to someone who would work on my 'anxiety' since that was the only problem. I stopped seeing doctors because I was frustrated from 16 yo until about 1 year ago (Im now 25).

I started doing my own research during this time and realized I definitely had all the symptoms of celiac, except for weight loss (this was before weight gain was a known symptom as well). I went on a gluten free diet off and on (because being 100% gluten free is HARD). Ive been gluten free 100% for the last 3 weeks and the first 2 weeks were miserable to the point I missed work a good majority of the time, I was sent to the hospital for a possible siezure and a migraine from hell for 4 days straight.

I told my doctor, who ran blood work about 9 months ago (not for celiacs because "that wasnt my problem") and she found out I have an underactive thyroid. She said nothing else is needed because the medication would solve all my problems. Medication didnt help anything, even my energy level.

I KNOW theres something else going on. I feel like a totally different person when Im not eating gluten. I dont get sick, I can think, Im not in pain, Im not excited, my bones dont hurt...I feel normal! Do I stick to my gluten free diet and that be the end of it? Or do I see someone who will perform the tests to confirm celiacs or an intolerance?

Whats the benefit from having tests done? Are there any? If there are, what type of doctor would I see? A GI doctor? An allergist? Internal med?

Thanks in advance. I appreciate the help!

[SMRI]

The benefit of the tests is knowing one way or another.  Problem is, you have to go back on gluten to have accurate results.  Being you have not really been off gluten for that long, you probably will be ok to start eating it again for a week or two.  If it's not Celiac, then going gluten-free isn't the answer.  I would suggest getting to a clinic like Mayo where they will investigate many possibilities and do a complete work up vs running from dr to dr with no communication between them.

 

I think most people find that with an actual Celiac diagnosis, you are more willing to accept a gluten-free diet.

[nvsmom]

Welcome to the board.  

 

If you suspect celiac disease, and since you already have a thyroid problem (Hashimoto's is closely linked to celiac disease), I would really push for celiac disease tests. Any GP can run celiac disease tests but some feel more comfortable referring you to a GI first.  Allergists are concerned with a whole separate part of the immune system (IgE based reactions) and are often not the best to check for celiac disease - celiac disease is an autoimmune disease and not an allergy. There actually is no such thing as a gluten allergy but one can be allergic to wheat.

 

Anyways, the tests to ask for are:

• tTG IgA and tTG IGG
• DGP IgA and DGP IgG
• EMA IgA
• total serum IgA (control test)
• AGA IgA and AGA IgG (older and less reliable tests which have largely been replaced by the DGP tests)
• endoscopic biopsy

You need to be consuming gluten in the form of 1-2 slices of bread per day or equivalent in the 8-12 weeks prior to testing so don't eat gluten-free just yet.  You'll need to resume eating gluten for a few weeks or a month, before you get tested.

 

About 30% of people experience withdrawal when they first go gluten-free. It can be miserable.  Two years later and I still remember the week long migraine it kicked off -  I often had migraines but that one was truly nasty. Extra fatigue, GI issues, moodiness and pain are often included in the first couple of weeks of gluten-free eating, but everyone is fine after the first month.

 

I too have hashimoto's and have found that celiac disease symptoms are very similar to Hashi symptoms.  There was a lot of overlap.  If you have celiac disease and are properly treated for Hashi's, you won't feel well.  Push to get tested.

 

Also, treating Hashi's can be very tricky. Even though your TSH lab migh say you are fine, a thyroiditis patient may still feel less than ideal.  I have found that most patients need to treat to your symptoms (which is hard if you are an untreated celiac) as well as treating according to the TSH (should be close to a 1 regardless of the lab range), free T4 and Free T3 (should be in the 50-75% range of the lab's normal reference range), and the TPO Ab.  Just using the TSH or T4/total T4 is not that helpful in some cases.  

 

Some Hashi's patients feel better with T3 meds in addition to their T4 (Synthroid). If your labs are pretty good, but you don't feel right, you might want to look into adding a synthetic T3 or trying natural desiccated thyroid like Armour.

 

Best wishes in whatever you decide to do.  

[Brinutbutter]

Thank you both.

Im going to call my doctor on monday and ask for the test. Ive been putting it off for a very long time. But at this point, Im absolutely miserable; physically and emotionallyly.

I wonder if those withdrawl symptoms happen to everyone, even non celiacs? I also forgot to mention my eyesight! In 1 year, my eyesight changed by over 5 points. My doctor said its not normal but that my eye itself is in perfect healthy. I also have beeb tested for diabetes to make sure that wasnt the cause. Can celiac disease cause your eyes to go bad?

[JewelEBeth]

Instead of eating gluten to test for celiac, they (probably GI doc) can do a DNA test for celiac.  It is called HLA DQ8 and HLA DQ2.  If they won't do it there is an independent lab that will do it for almost $400.00.  You can find out more on the Gluten Free Society website - (Company Name Removed - They Spammed This Forum and are Banned). When I can afford it I would like to have it done because celiac disease does so much damage to your body (yes - even eyesight).  Plus if you have an official diagnosis of celiac, you can do a tax write-off on all your gluten-free expenses.  Open Original Shared Link

[oni]

The genetic tests do not diagnose celiac disease. For that you need the tests listed above by NVSMOM.

IMHO genetic testing is largely an expensive waste of time. Something like 30% of all people have DQ8 and DQ2.

[nvsmom]

Yes, the genetic tests just tell you if you are in the higher risk group for getting celiac disease, not if you have it.  Plus it is possible, although quite unusual and rare, to get celiac disease without the DQ2 or DQ8 genes.