I just want to feel better

[Natalie2]

My blood work recently indicated probable celiac disease, my Tissue Transglutaminase Ab IgA level was 73.4 U/mL.  Now I am waiting to have a biopsy to confirm, however, I don't know how long the wait will be.  In the mean time I have been told not to change anything and to keep eating gluten.  However, my pain just keeps getting worse and worse. Everything is sore from my fingers to my toes.  This last week my legs and feet have hurt so bad I can barely walk.  Everything aches, even when I am just laying in bed.  I have zero energy and I just want to feel better.  I am a teacher and really wanted this to be dealt with during the summer so I could go back to school feeling better and having more energy.  It's been years of progressively worsening symptoms.  I feel like the summer is slipping away and I am not getting anything done.  I can barely function enough to take care of my family.  Making meals and cleaning up feels like the equivalent of climbing a mountain.  I understand that my pain might be due to vitamin or mineral malabsorption, I am just wondering if there is a way to ease the pain until I can stop eating gluten.  I am getting really discourage thinking about going back to work with my current energy and pain level.  Does anyone have any suggestions?        

 

 

[trents]

Natalie, welcome to the forum!

What is the reference range for your tTG-IGA? You gave us your lab score but it's hard to evaluate the significance of the number unless we know what the normal range is? The reference range would help us know if it your score represents a strong positive. And different labs use different reference ranges. Did your doctor run only that one antibody test? 

Having said that, even a weak positive is strong evidence that you do have celiac disease. 

There is no law that mandates you must have an endoscopy/biopsy. If you were suffering from celiac symptoms despite a negative tTG-IGA score then the endoscopy/biopsy would make a lot sense as it would confirm whether or not you have celiac disease vs. non-celiac gluten sensitivity (NCGS).

I would assume you have celiac disease and commence the gluten free diet in earnest to see if symptoms improve. That's really the bottom line anyway.

I would also suggest you start taking a high potency gluten free adult vitamin together with a high potency gluten free B-complex. Costco's "Nature Made" vitamins and supplements are gluten free. In addition, I would add in some D3 and maybe some magnesium. B-vitamins are water soluble so there is no need to fear overdosing. You will just pee out the extra.

 

[Natalie2]

The reference range is <12.  I think that was the only antibody test done. I want the endoscopy/biopsy because I want to know for sure that it is Celiac. Thanks for the suggestions on vitamins I really appreciate it.   

[trents]

You need to be daily eating an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks before the endoscopy/biopsy to ensure a valid result.

[Scott Adams]

I think the recommendation is eating that much gluten for 2 weeks before a biopsy, but if you’re in pain, and you’ve got a very high positive blood test, there may be no need for the biopsy if you cannot wait that long. If you went gluten-free and it relieved your symptoms it would confirm your diagnosis.

Perhaps discuss this with your doctor and they may be able to move the biopsy up, or just allow you to skip it and try the diet.

[RMJ]

Going gluten free and having your antibody level go down would also be a great indicator that you really have celiac disease.

[trents]

7 minutes ago, Scott Adams said:

I think the recommendation is eating that much gluten for 2 weeks before a biopsy, but if you’re in pain, and you’ve got a very high positive blood test, there may be no need for the biopsy if you cannot wait that long. If you went gluten-free and it relieved your symptoms it would confirm your diagnosis.

Perhaps discuss this with your doctor and they may be able to move the biopsy up, or just allow you to skip it and try the diet.

Yes, yes. My bad. I knew better than that. 6-8 weeks of gluten challenge would apply to the serum antibody testing. Thanks for catching that, Scott.

[seamist]

16 hours ago, Natalie2 said:

The reference range is <12.  I think that was the only antibody test done. I want the endoscopy/biopsy because I want to know for sure that it is Celiac. Thanks for the suggestions on vitamins I really appreciate it.   

 I too would want the biopsy. I would not be taking  random vitamins. You can get labs done… bloodwork to check for deficiencies  in the mean time.  Your Dr will then recommend vitamins if needed,   some maybe by script if called for. Best wishes

[Wheatwacked]

I was pretty much as you describe for years. Prednisone is the only thing that controlled my body pain. Even after 7 years gluten free I still need it. Aspirin: could sleep all day. Ibuprofin 800 mg three times a day: Could watch TV in bed. Tramodol controlled most pain but still needed aspirin or advil or tylanol for the inflamation and still not functioning beyound waiting for the next dose. Pre Gluten free diet (2014) I needed 30 mg prednisone a day to function, today only 5 mg. The doctor wants me off it so I spent the last six months trying and got nothing done. Started it again and am finally finishing things in days that I started last January.  l can't function without it. Alcohol, Nsaids, Alka Seltzer (aspirin and bicarbonate) even Tramodol (synthetic opiod) do not help. Prednisone has a bad reputation, but it saved my life. Just like some people need insuIin I need glucocortisoids. I finally have gotten a referral to an Endocronologist next month.

Talk to your doctor about trying it. Like the GFD, most doctors think it unnecessary.

[Kate333]

Hi Natalie.  

If the GI doc can't assure you the EGD will happen soon, I would suggest trying to go strictly gluten-free (no exceptions) for a few weeks to a month and see if you notice any improvement.  If so, your gut is probably healing rapidly (typical for younger patients), you may not even need a scope/biopsy for a definitive celiac disease diagnosis.    

If no changes with a gluten-free diet, you might ask for a thyroid blood test (TSH) and anxiety/depression evaluation, as the symptoms you describe (extreme fatigue, body aches/pains) are so VERY common in those conditions as well as celiac disease.  Learning that was a real revelation to me.    I also learned that the gut is where most serotonin (I think over 90 percent) is made, the hormone which affects not only mental well-being but the entire body.  So it seems logical that if the gut is harmed/not properly functioning due to celiac disease or any other cause, the serotonin levels will be affected, thus making us miserable.   Your description of feeling like you are climbing up a mountain when doing simple chores, tasks really rings a bell with me as I have been there, even after 14 months on a gluten-free diet.  

I have found the Anxietycentre.com website very helpful as it has great articles on how anxiety/depression can present in so many surprising physical symptoms, as well as great tips for reducing stress.  To ease my fatigue and body pains, I've also used a low-dose antidepressant (which boosts my serotonin), massage, and Youtube videos on meditation, esp. helpful during this stressful Covid pandemic. 

Of course this is not medical advice, just my own experience, and I urge you to always consult your doctor(s) before doing anything you may hear on this blog or elsewhere.

Best wishes  

 

[Kate1990]

Hi Natalie,

Sorry to hear that you're in so much pain! I'm not sure where you are located so this might not be an option, and it's not super legit, but it's what worked for me: being super annoying. I live in Canada and I was told I'd have to wait at least a year for a biopsy. I called every day for 3 weeks, after which they caved in and gave me an appointment for the following week. Again, not very legit, and might not work, BUT it could be worth a try. We really have to advocate for ourselves especially with this disease that not many fully understand. 

[AlwaysLearning]

As far as I know, there are a few reasons to go ahead and to get a biopsy.

1. Confirm the blood test results or to give a positive diagnosis if blood tests were inconclusive.

2. Give a point of comparison of healing, compared to a future biopsy. 

3. If you live in the US, to get a positive diagnosis to allow you to take a tax deduction for the difference in the cost of gluten-free foods, if your blood tests weren't conclusive.

4. Give the doctors another way to make money. (I know, that is jaded, but we can't ignore this if you already have blood test results that confirm that you have celiac.)

5. For some people, help prove that there is a need to take celiac disease seriously, making it easier for them to so stay gluten free. (Both blood tests and endoscopies can be inconclusive. Damage to the villi can be patchy so if it isn't visible to the naked eye, then they might not take samples from areas that are damaged and so even an endoscopy can return a false negative. But if they do find villi damage, then there is no doubt that you have celiac.)

Though I would never recommend that someone ignore medical advice from their doctor, at some point, we all have to take control of our own health decisions. I know that for me, consuming two pieces of gluten bread a day would be enough for me to stop digesting food entirely, so it wouldn't be an option for me to continue consuming gluten while waiting for a test. 

But there is a chance that your reactions to gluten will get even worse after you go gluten free, so this may be your one and only chance to get these test results during gluten consumption. 

Can you get your test date moved up?

Anyway, I'm just sharing ideas for things to consider as you make the decisions. Unfortunately, no one can really advise you to do one thing or another because this really is a six-of-one, half-dozen-of-the-other type of situation.

But I will wish you the best of luck in the next few weeks and hope that your recovery will be fast once it does start.