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What Is "normal"?
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I was diagonosed with bloodwork and biopsy last September. Since then, my GI symptoms are better although not completely cleared up (I think I have IBS with constipation so I started taking fiber and it is helping). But I have a lot of joint and muscle pain. I had some vision problems which have cleared up now. I am exhausted all the time. The doctors have run every imaginable test on me - everything is normal including MRI for MS. Then they gave me antidepressents and told me that it was anxiety and depression. I have been on the meds for 2 plus months with no significant improvement. I am very careful, most of the time, with what I eat. My bloodwork now shows no celiac antibodies.

I am really beginning to believe that this may be normal for me. I HATE the thought of that. I am in school and have 3 kids. I NEED to be able to function without naps, etc. I am not sleeping well at all at night. On the other hand, I fit a lot of the criteria for fibromyalgia. I am seeing a different neurologist and a rhuematologist in August.

My mom and sister are both also celiac patients and they feel GREAT. What is wrong with me? Is this normal and I should just accept it? I hate going to doctors anymore because I feel like a nut case.2

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Just a thought... Has anyone checked your thyroid levels? I got a diagnoses for hypothyroidism from my regular dr the same day I heard that I had celiac disease from my dermatologist. One of the mian symptoms of the thyroid is tiredness. These autoimmune diseses are linked. Another thought...any full time student with three childten is bound to be tired. You have some tough jobs. Good luck!

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HI Missy,

I am sorry to hear you are not feeling well but glad you do not have MS. I am in the same boat at you except I am being tested for Lupus. I have been gluten-free since last Sept and only shown minor improvement. I also have htpothyroid but I do not remember experiencing the same kind of fatigue with that as I did with possible Lupus.

It is good that you are seeing a Rheumy and I suggest making a list of all of your symptoms and taking it with you on the appt. Also try your best to explain your fatigue, by telling the doc what time you go to bed, what time you get up and any naps you may have to take during the day. I told my doc I had fatigue but she did not grasp it until I really explained it to her.

I hope you begin to feel better soon, please let us know what the doctors say next month!

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Defenitly get your thyroid checked! I was so tired before mine was dx.

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I had my thyroid checked and that was fine. I also was checked to see if I had the antibodies for Lupus, which I did not. Thanks for the quick responses. I will let you know what I find out. I have some days better than others. Yesterday was killer for the pain, but today is not as bad. I am sure I will be napping soon though, as soon as I get the little ones to nap.

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HI Missy,.

Have you had your hormone levels checked? Have them check estradiol levels. Grab a copy of the book (or thumb through it at the bookstore) "IT'S MY OVARIES, STUPID" to see what the 'optimal levels' are for hormones. That has a huge effect on energy levels.

Another thought: are all of your medications gluten-free ???

Hope you get some answers soon,

Kathleen

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I went to amazon .com to look at the book. It looks like an interesting book. It was for sale for 2.95 so I ordered it. I will review it and bring it to the doctors appointments in August. I just want to be able to be "fixed". Thanks for the advice. I will let you know what I think.

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Hi Missy, You are a carbon copy of my 18 yr.old celiac daughter. GI celiac symptoms are slightly improved by the diet but reflux, joint and muscle pain and vision are a problem. Vision problems began with a bout of conjunctivitis and she is awaiting her glasses so she can drive at night. She had 20/20 prior to the infection. She saw a Rheumatologist this week, Lupus and Rheum factor were negative but she has Ehler's Danlos Syndorme type 3 (hypermobile joints) and the doc recommended Vioxx to relieve the joint and muscle pain since she can't tolerate ibuprofin because of the reflux. I think the celiac disease is the culprit and the most notable side effect of the gluten-free diet has been reduced leg pain. I thought the vision problems were related to the celiac disease and your case strengthens my theory. Jsut wanted you to know that you are not alone.

Kathy B

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    • Depression / anxiety issues
      Thanks for the advice Irene. I will look into that book. I know I'm a long away from healed but I got my hopes up when I felt better in that first week, it's just constantly a battle. I am hoping and praying that I get better soon 
    • Celiac - How many symptoms can there be?
      Do you take digestive enzymes and probiotics? That may help. Have you met with a dietician for help figuring out how you're getting glutened?
    • Depression / anxiety issues
      You should read the book' Jennifer's Way" you might find her story similar.  You will find better health- but be patient- it's an up and down road and takes a long time! For me it's been 7-8 months and I'm not well but slowly improving I hope
    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
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