Gluten Challenge And Awful Symptoms

[Megan1980]

Hello,

I hope this makes sense but my brain is pretty fuzzy right now. I'm trying to be as brief as possible, but I don't want to leave out any important details, so I apologize if it seems too long and detailed.

Celiac runs in my family. I have the genes for it (tested 5 yrs. ago) but was told I didn't have it at the time, but could develop it later. I got tested again 15 months ago and it came back negative. I didn't think I had celiac, so continued on my regular diet. Then I was injured, had surgery, and was in a wheelchair for about two months. I've heard the disease can manifest after surgery and stress, and that situation was definitely stressful. Then I was convinced by family members to go gluten-free anyway, and I started that, but when I ate a bagel again, I got some serious brain-fog. I decided maybe I should try to get a diagnosis before going gluten-free for good.

I'm not sure how long I was really gluten-free. It could've been a month or it could've been a month and a half, I'm just not sure. But I think I was going gluten-light for maybe a month before that. Now I'm trying to do a gluten challenge and I don't know if I can do it. I'm having so many strange symptoms, I had a few days of dropping everything I tried to pick up and move around in my hands, like q-tips, utensils, etc., just having really poor dexterity, numbness around my lips, getting headaches frequently, jaw tightness, pains all across my facial bones, swelling in my gums, teeth pain, feeling like a new form of migraine I'd never experienced (used to get migraines but they pretty much stopped years ago) weird pressure changes in my head cavities (hard to explain), pressure in my palate, feeling like my ears need to pop, heaviness in my arms, searing, tear-inducing pain in my right arm, moving to my back around my shoulder blade, hips, cramps in my calves, horrible pains in my feet and heels, knee pain, ankle, wrist, tailbone/sacrum, I've had tightness in my throat, lump in my throat feeling, difficulty breathing, fatigue, feeling like I need to lay down 3 minutes into a shower, feeling like it's hard to raise my arms to comb my hair, then forgetting which way to turn the hot and cold shower faucets to regulate the temp., then trying to brush my teeth and thinking I had the toothbrush in the wrong hand shortly after. It took me a bit of looking down and thinking about it to realize it was the correct hand. I can't remember anything like that ever happening to me.

I've had days where I felt totally lethargic in the morning and then at night this super irritable, restless leg syndrome kind of feeling, just really uncomfortable and amped up kind of feeling. I've had a lot of trouble finding the right words. Like for instance trying to ask someone about "bingo" and what came to my head as I was grasping was "bicycle race". Trying to explain things or speak is super frustrating, and when my boyfriend asks me questions that require explanations I sometimes just have to tell him I can't answer. It's like my brain is stuck, and it just makes me really frustrated. I've been really touchy and emotional, and cry.

Another thing is that my period came at the normal time, but was very light and then just stopped. It's definitely the weirdest period I've ever had. Usually they are regular/predictable/similar in length and flow. I've also had more stretch marks seem to appear overnight. I got stretch marks on my stomach after the surgery and gained a bunch of weight. I was already overweight but I probably gained 50 lbs. since then. The weird thing is that you'd think once I got back to walking and using my legs, some weight would come off, but it seems like I'm gaining more than I did in the wheelchair time.

I explained some of those symptoms to the doctor and she said she had no idea, and when I talked about the breathing problem and the tightness in my throat she said it was probably a panic attack. I used to get panic attacks-- it was nothing like that. That's the thing about all of these symptoms-- they're not things I've experienced before. I tried to chalk it up to stress, or think of the possibility that it could all be in my head, but it just doesn't add up. Could I really will my joints to ache?

The thing that is especially driving me crazy is the possibility that I'll get another negative test. So I want to keep doing this gluten challenge thing but I'm not sure I can hold on much longer. And it's so hard to get definitive answers about how long the challenge needs to be. If I'm having symptoms, will I still test negative? I know I could be gluten-sensitive rather than celiac, but I really want a definitive diagnosis.

I've looked up my symptoms and they point to hypothyroid. I know Hashimoto's goes with celiac sometimes. Some of the symptoms seem to overlap.

So why am I writing all this? Well, in part to see if symptoms match anyone else, in part to vent, and also maybe hoping someone can shed some light on the gluten challenge and how much longer I have to endure this.

Thanks for reading!

[SMDBill]

I haven't taken a gluten challenge. One time I was glutened and it was horribly painful. I refuse to do it intentionally. I am self diagnosed and have my GI appt Monday for official testing. From what I"ve found, the antibodies stay in the body at high levels up to 6-12 months. Earlier detection is always best, but if they're high it should be caught, even in my case. I'm 7 weeks gluten-free with 1 glutening and possibly another tonight (unsure so far). If you can tolerate it, gluten in your system is far better than not, but only if it does not make you incapable of normal life. Even gluten light should be better, but still, you have to be functional. Does your doctor have an on call nurse during the day you can ask questions and get relatively quick answers back? That may at least give you the doctor's thoughts on it in advance of your appt.

[lucycouture]

Hi there Megan

I'm new here too and came to post about the same thing - gluten challenge! I've had a mix of positive and negative results over the years and they are trying to come to an affirmative conclusion. I've been on the low FODMAP diet this year which is low in gluten, so now I am having to undertake a gluten challenge. I ate two pieces of toast on Tuesday night and have only just stopped feeling awful and being in agony

My dietitian said it would only be for a few weeks, say 3 or 4. This feels like a lifetime to me though, how are we supposed to do normal life stuff? I certainly can't leave the house when my symptoms flare up as I get awful diarrhea.

How are you coping so far?

I wish I had advice but all i can give you is my sympathy as I'm going through the same thing!

Lucy

[ravenwoodglass]

I could have written your post a 15 years ago. I had a lot of other symptoms also but the neuro ones are right in line with what you are describing. I had test after test after test and all came back in normal ranges. That included tests for celiac as I also had severe GI symptoms along with really bad joint pain. The only test that came back positive was a brain MRI which showed UBO's which are diagnostic of celiac attacking the brain. Unfortunately my neurologist didn't know that.

Make sure your doctor has tested for thyroid and other issues and let them know if you had some relief gluten free and what the impact is now that you are doing the challenge. You do also have the choice of going back, very strictly, to the diet and seeing if that helps your symptoms improve. Being on the diet will not impact testing for other problems but will insure that the celiac testing is negative. I found sublingual B12 to help with some of the neuro issues but your level should be checked for a baseline before you begin if possible.

[my3monkees]

I have to admit, I don't always see the need for all the testing. Maybe for children, too allow for school accomodations. But for an adult, if you feel better while gluten-free, you have your answer! Why put yourself thru misery just to receive the "official" diagnoses. Its not going to change anything, the outcome will be the same. Besides what if it is just and intolerance and not Celiac disease. The testing will come back negative again. But, it still doesn't mean you can eat gluten. I think a little common sense goes a long way. JMHO

[Megan1980]

Thanks for all your comments and advice. I had many symptoms suggestive of thyroid issues so I got those antibody tests too. All my panels came back negative. I believe I got the full celiac, including the IGA deficiency or whatever that is, the test to see if you even have enough of the stuff to make it show up. My score was slightly higher than the one I had 15 months before but still not even into the "weak positive" category. I got the thyroid peroxidase enzyme test (TPO) and another couple of thyroid antibody tests. According to all the blood work I've had, nothing is wrong with me besides a low vitamin d level despite my constant high intake and low ferritin, and some BUN level in the blood that when I looked up online said indicative of either low protein diet or malabsorption. I feel I must have some sort of absorption issues to be having those lowered levels.

The thing I can't get an answer on is whether non-celiac gluten intolerance can cause malabsorption or deficiencies. And I know they can cause similar symptoms, but are there any symptoms that would be more indicative of celiac rather than just intolerance. I know I have the genes for celiac and my sister is positive, my other sister has the gene but got a negative blood test, says she feels better when she's gone gluten free but since she doesn't have celiac she doesn't stay on the diet because it's too hard. My mother has never been tested but knows she has issues with gluten. There are lots of other aunts, uncles, and cousins in my family who have confirmed celiac.

Now I'm at the point where I'm being flagged as nuts by my doctors and I'm running out of hope. I have so many symptoms, it's crazy.

I've had full-on hallucinations, what I believe was occipital lobe seizure (my symptoms were perfectly described by the symptoms list for it) numbness, tingling, sudden muscle weakness, muscle wasting, cognitive issues, I could go on and on.

I understand that some people don't see the need for diagnosis, but I would like to know whether I have celiac or just intolerance. To me it's the difference between worrying about if I go out to eat and soy sauce touches something or working in a kitchen and inhaling flour (I've been a cook so it's important to know how careful I need to be). If I'm gluten intolerant and it's not ruining my intestines and possibly my brain and possibly leading to lymphoma, that's a huge difference between just maybe feeling crappy for a bit.

I hope that makes sense. I've been reading around here for answers and done tons of research online but I still can't get to the bottom of celiac vs. non celiac gluten intolerance.

[Megan1980]

Oh, I also should have said, to Ravenwoodglass, my B12 was normal. It was also normal last year when tested but the folate was super high. I asked my doctor what that meant and she said "I don't know" and left the office. This year when tested the B12 was about the same but they've changed levels for folate so I'm not sure if it's okay now. It still looks high but was not in the "abnormal" category this time around-- but I don't really understand the results.

[mushroom]

I hope that makes sense. I've been reading around here for answers and done tons of research online but I still can't get to the bottom of celiac vs. non celiac gluten intolerance.

Unfortunately, no one really knows what non-celiac gluten intolerance can/does do to one because it has only recently been recognized as actually existing. Research is under way, but it is going to be a while before anything useful comes of it, I'm afraid. Formerly, you were told you did not have celiac and sent on your gluten-eating way.

[bartfull]

Interesting that you seemed to have had a seizure. This article says that high folate levels might be a cause of seizures: Open Original Shared Link

[adiari73]

I haven't been tested, but I know I have something celiac going on. I started a gluten free diet on my own accord, and I feel great! I have been testing my self, just to be sure, but with consequences of course. I tell you this, envy single time, the celiac symptoms are there. Not to mention that, I've been a type 1 diabetic ask my life. 35 years to be exact.