Feeling Horrible After Cutting Out Gluten

[DistressedNewbie]

So I've been trying to go gluten free on and off for a couple years now with no such luck, but now that I'm in a much more emotionally stable place I am ready to give it my all.

I have never had the celiac test done on me but I've been having issues with blood in my stool (darker blood), mucus, random attacks of very painful cramps and diarrhea, being constipated all the time, having lactose intolerance when I never used to be and always being tired and in pain. I have Hashimotos hypothyroid as well so I am trying gluten free out to see if any of my symptoms improve.

I've been gluten free for a week now and I'm physically feeling very ill. It almost feels like I have a cold or flu. My body is in a lot of pain, I have post nasal drip and sneezing, really bad headaches and going to the bathroom a lot.

Is this normal or a coincidence? Shouldn't I be feeling better?

[kadege]

I've read that sometimes when people go gluten free their body can go into withdrawal. That could by why you're feeling worse right now.

[mamaw]

I do have  an important  question? Why  have  you not  got tested?

[notme]

yes, that sounds like gluten withdrawal.  mine lasted about 2 weeks - feels like the flu.

 

have you had any other tests, besides thyroid?  dark blood in the stool sounds like something different to worry about  :/

[kareng]

People with Hashimotos are supposed to be tested for Celiac.  

 

 

"Celiac disease is more frequent in those who have the following autoimmune conditions:

• Type 1 Diabetes Mellitus: 2.4-16.4%
• Multiple Sclerosis (MS): 11%
• Hashimoto’s thyroiditis: 4-6%
• Autoimmune hepatitis: 6-15%
• Addison disease: 6%
• Arthritis: 1.5-7.5%
• Sjögren’s syndrome: 2-15%
• Idiopathic dilated cardiomyopathy: 5.7%
• IgA nephropathy: 3.6%"

 

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[nvsmom]

Yep, withdrawal... It can be nasty.  I remember being so tired, cranky and a horrible, multiday migraine.  Yuck.  Mine lasted close to two weeks as well.

 

Ditto the others.  You should consider getting tested before going gluten-free.  Accurate blood tests require gluten is eaten in the 2-3 months prior to testing.  If you wnat to test in the future, you'll hav eto resume eating gluten, and make yourself sick, for up to three months... a hard thing to do for most celiacs.

 

Best wishes.

[DistressedNewbie]

It's a bit strange, the doctors I did see did not recommend I get tested because they said it would not be worth it. I've had 3 doctors tell me to just go ahead and start cutting out gluten and see how I feel. One was my endocrinologist. I will be seeing a gastroenterologist soon about the other issues. I've had my symptoms chalked off as "just IBS" for many years, until I started bleeding.

[DistressedNewbie]

I would also hate to go back to eating gluten just for a test since this is my longest streak I've been off it and my health is getting pretty bad already for being so young

[ravenwoodglass]

Call the GI you have an appointment with and ask the doctor to call in a script for the blood test. Sometimes they call it into the lab and other times they will have you pick up a hard copy. I could be wrong but the other doctors sound like they were basically blowing you off. Not a good thing so if you can find other doctors it might be a good idea. 

It is IMHO very irresponsible of doctors to tell folks to just try the diet without testing first. If you can't get the blood test called in then do keep some gluten in your system by eating at least 1 to 2 slices of bread (or the gluten equivelent) daily. Some find it helpful to eat their gluten at night before bed. Unfortunately you need to keep those antibodies active until you have had celiac testing done.

One last thing if by chance you are being woken out of sleep by tummy issues make sure the doctor knows this. IBS does not wake folks up at night from what my GI said after I was diagnosed. 

[Celiacandme]

If it was me, since you've just been gluten free this time for one week, I would call today and tell them you want the blood test run. It's a simple blood draw. Make sure they run the full celiac panel. I do believe it would be helpful to know these levels. I know they suggested going gluten free but I'm surprised they didn't run the blood tests when they told you that and then again 3-6 months later to see if your levels started coming down. (that is if they are high)

Good luck and keep us posted! I hope you start feeling better soon!

[GF Lover]

I also think you should get tested.  There may also be something else going on too.

[BlessedMommy]

I don't understand why the doctors think that it wouldn't be worth it. It's just a simple blood panel and not particularly expensive and invasive. If nothing else, they need to at least rule out celiac, with the symptoms that you're having. My daughter's doctor didn't hesitate to order the celiac tests for my daughter, at my request. The tests turned out to be negative, which helped us to have peace of mind that gluten wasn't the problem, so we could move on with confidence.

 

Due to circumstances and poor medical advice, I was never tested. I can't go back in time now and fix it as a gluten challenge would most likely be fatal for me, but if I had it to do over again, I would've gotten tested, even if I had to pay for it out of pocket.

[cyclinglady]

My hubby got that same advice, "Go gluten free and see if it helps," 14 years ago by two MDs. He did and in about a year, he was feeling great. Autoimmune disorders run on his side (Hashi's and MS) so we think he has celiac disease. But does he have Celiac Disease? For sure?

I got my diagnosis two years ago and hubby will tell you that I get way more support from family, friends and medical staff. Getting my family tested was easy. Getting other tests like bone scans was easy. Staying on the diet? Easier as there is no doubt.

[DistressedNewbie]

It's very sad but I have to agree on the whole doctor's always blowing me off thing. I'm a very difficult case because I have so many health issues yet I've gone through tons of tests coming back as normal. They don't want to try helping me because all the easy stuff for them has been done already. I even had one doctor say "well it looks like you just have the valerie disease and we don't know" (valerie is my name)

I will call my doctor today and ask about the celiac blood test. Thank you all very much for the feedback

[frieze]

it is cheaper for insurance if you don't test, if you belong to an HMO sort of insurance the docs are the financial gate keepers.  

[ravenwoodglass]

Doctors can be real jerks. I even had one tell me I just wanted to be sick and it was all in my head. Glad to hear you are going to try and get someone to listen and actually test you. After all celiac testing is done then you can give the diet a good strict try no matter what the results but it is important that they test you first.