Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

What The Heck Do I Do Now?


upwitht21

Recommended Posts

upwitht21 Rookie

Hi all!

I was diagnosed back in November with celiacs. I have been very diligent since the day my blood was drawn to eat 100% gluten free. My diagnosis didnt come as a shock since I have a family history of it but at the same time it was frustrating because it took 3 years to be diagnosed. I went to the doctor constantly because of joint and bone pain only to be told "here's some painkillers". I just kept going because there was obviously something wrong and I am not a fan of narcotics (my mom is an addict) and didn't want to take a pill to mask symptoms. Finally found a doctor who wanted to test for it and bingo super positive blood test. We decided to skip the biopsy since scheduling one would have taken over a month and if I felt better on the diet then obviously it was an accurate test. Now that I am gluten free I can tell you I didn't realize how constipated I was all the time and I now have no headaches and it seems like I will finally have a regular cycle. So lots of positive things going on but.....

I'm still tired all the time and not sleeping well. I went to the doctor and yet again I get the take a pill speech. They think I need an antidepressant because I'm severely depressed I had to demand they run blood work to make sure nothing else is going on. I just don't understand how they won't even consider that I may deficient on something. I am currently on a prenatal (not because I'm pregnant but because we were actively trying, taking a break right now) and 5000 units of vitamin D because my levels were in the toilet they said I can lower it to 2000 units since they were normal the last time but it's January in Minnesota no thanks.

I spoke with the nurse today and she said all my labs were fairly normal but what the heck does that mean and I will get a letter in the mail. I didn't want to start supplementing myself without knowing where I was at first but they aren't helping me figure things out and I'm not depressed (it actually makes me angry because depression is a very serious disease and people who actually are needing help don't get it)

Does anyone have any advice for me? I'm feeling so lost with this and I have my husband angry with me because I don't want to fix myself and get help...he's a take a pill person ugh!!!!!

Thanks in advance!

Jess

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Aly1 Contributor

Hang in there, you've only just begun your battle! It can take months to iron everything out, and for some people, longer. I have had lifelong problems with depression and have used tons of anti-depressants. Not one of them helped me as much as going gluten free and the following supplements (I did both at the same time so I can't say for certain which has had the greatest impact):

1. A really good daily multivitamin - MAKE SURE IT'S GLUTEN FREE. I use Eclectic Institute's 'Vital Force Caps' at the recommendation of the doc who dx'd me. It's not cheap but despite being really poor right now I decided I was going to take whatever this doc advised, since after 10 years of illness with no help from numerous docs, he pinpointed gluten. He's my hero :).

2. Udo's Oil 3-6-9 Blend - also recommended by my hero. It's an oil that's a perfect ratio blend of omega-3 and omega-6 oils. I take 1 tbsp a day, added to food. I think this one has had a big impact on my depression - speculation of course. But omega-3 deficiencies are really common and can lead to depression amongst numerous other things.

I was on those for about 2 months when I discovered my seasonal effective disorder had disappeared...and I can honestly say for the first time in my adult life that I am not depressed! For me that's a big WOW.

At 2 months in, you are at the stage where many start to become extra sensitive to even the smallest amount of gluten, so make sure your supplements and little things like spices are all gluten-free (McCormicks single ingredients ones were recommended to me here). Be very wary about cross-contamination in your home and remember to check Every Single Ingredient even if it seems gluten would never be present (learn from my mistake: I was baking gluten-free muffins without realizing the baking soda had been processes in a facility alongside wheat. Had I read the box I would have spared myself 2 weeks of feeling lousy and not knowing why.) Know that it's very common to have multiple sensitivities aside from gluten - I for example have issues with oats (even gluten-free oats - and that's a common one), corn, sugars & gums like guar gum), dairy. There's a good chance that gluten is not the only thing messing with you physically and emotionally.

As I said before you are at the earliest stage of the battle. I would continue to try to avoid medication while you are sorting everything out, there's a good chance you don't need it! Do some research and educate your husband (tell him if he wants his opinion noted, it needs to be an informed one!)

And find another doctor! Preferably one who understands celiac, it would make a world of difference. Try googling for your local Celiac support group, and call or email for a recommendation for a new doc. You really need a doc on your side to help figure out your deficiencies and get your health back on track.

Good luck!

Link to comment
Share on other sites
Aly1 Contributor

PS. I would call your doc office and get your test results sent to you (you may have to sign something to get them). When you have them you can research the values and find out for yourself if you are on the lower end of the spectrum for any of them - sometimes just slight deficiencies can cause symptoms. Of course, you do need to be cautious that you don't overdo anything in your zeal to heal yourself. A great reference for supplements can be found at www.ods.od.nih.gov - you can type a vitamin into the search field and find documentation on safe limits and the best forms of a vitamin to take.

Link to comment
Share on other sites
Skylark Collaborator

I didn't recover from the fatigue, sleep problems, and in my case bipolar illness until I started taking high potency probiotics, fish oil, and a complete vitamin/mineral/trace element supplement. The one I take is called EmpowerPlus from Open Original Shared Link

I'd strongly recommend straight fish oil rather than omega3-6-9 blend. The American diet is far too heavy in omega-6 because of all the vegetable oil and poor quality meat we eat and the last thing you need is to deliberately add more. Correcting the omega-3 deficiency helps, but getting the omega-3:omega-6 ratio right across your whole diet helps even more because it lowers inflammation. Try to lower your consumption of omega-6 fatty acids by avoiding fries, chips, and processed foods heavy in vegetable oils. A little olive oil is OK.

Link to comment
Share on other sites
upwitht21 Rookie

Thanks for the supplement tips I will be making a trip to target this weekend to add a few things and I'm suppose to get a letter from the doctor with her report. We live in a very rural area so finding a doctor who understand celiacs is nearly impossible so I need to advocate for myself. My house is completely gluten free, everything has been checked and rechecked including looking everything up that doesn't say gluten free on it. I eat a very healthy diet and consider myself a fairly fit person. I work out on a regular basis and am very active so they ignore me when I same I'm exhausted. Apparently you can't be exhausted and still take your kid roller skating sorry that I push my limits on a regular basis because that is the person I am.

I guess I keep trekking forward lol!

Link to comment
Share on other sites
Skylark Collaborator

As well as the supplements, it may simply take more time. You've only been gluten-free for a couple months. If you had a positive biopsy it may take considerably longer to recover. There was a thread some time back on how long people took to get back to feeling normal and the answers were anything from two weeks to two years. Celiac can do a LOT of damage.

I forgot - another supplement to look for is sublingual B12. You want methylcobalamin, the form your body uses. We all seem to be very poor at absorbing B12 from pills and the sublingual can help.

Link to comment
Share on other sites
upwitht21 Rookie

I chose to skip the biopsy because my oldest had an inconclusive one a few years ago and his blood test came back positive this time (he's checked every 3 years as part of his annual screening). My doctor was completely comfortable diagnosing off blood test alone in combination with symptoms and the fact that I have 5 first cousins with it lol. I could even get in to see someone until February to do the biopsy so I wasn't wasting the time I wanted some relief as soon as possible and my bone pain is significantly better.

So at least point I should add b12, fish oil, and a good multivitamin.....would you recommend a multivitamin over a prenatal?

You guys have been so much help!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I'd recommend a multivitamin with chelated minerals and trace elements as well as vitamins. I'd look for something really complete like Solgar Omnium or Solgar VM-2000. Metagenics makes good multiples too. The stuff I'm taking has pretty much everything but the kitchen sink! You need trace elements and minerals as well as vitamins to rebuild enzymes and get going again. Remember, you have not been absorbing your food properly for years. (Not to mention that a lot of the food we grow now on depleted soil isn't very nutritious.)

Obviously you want to be on a prenatal once you go back to TTC. Seems like it's safest. Do pick up a high-quality chelated one like Solgar or Metagenics though.

Link to comment
Share on other sites
AVR1962 Collaborator

Try to get the supplements figured out without anti-depressants first. I had a terrible time with depression for years and was on different anti-depressants but all they do is make you not feel what you actually need to feel and need to deal with. For me, I had to get my supplements to a point that my body was functioning properly. I too was low in various areas but the docs really were not too helpful with the vit side. Aside from writing a prescript for calcium and a prenatal (also not pg), their answer was meds. Go natural. The vit D should help alot. Make sure you take a look at your labs......iron deficiencies are very common among celiacs and if your iron is even teetering on the low level it can cause a great deal of fatigue and nausea.

In my case, I linked every one of my symptoms to a vit and by putting them in my diet I was able to correct so many issues. Docs would have been throwing me more prescripts for meds.

Link to comment
Share on other sites
Kjas Newbie

Sounds like your blood work wasn't conclusive. I would be asking for the results and / or re-testing depending on how old the results are. The iron range for "normal" is huge. What's considered the low end of normal is plenty low enough to have most of the symptoms of anaemia. That's just one example. Vitamins, minerals, trace and amino acids should be looked at.

Other options for testing are: thyroid & hormones, blood sugar, blood pressure and things like serotonin. All of those things can make you feel tired or depressed, other than vitamin deficiencies, and all are relatively common in people with celiac disease. Even if you're out of normal range with any of those things, it can have pretty big effects on the way you feel. I would test them just to be sure if you can't find anything wrong with your blood work.

Link to comment
Share on other sites
upwitht21 Rookie

Another thing that is driving me crazy is my hair is falling out horribly and it used to be curly now it's straight and stringy....so sad =(

Link to comment
Share on other sites
Skylark Collaborator

Another thing that is driving me crazy is my hair is falling out horribly and it used to be curly now it's straight and stringy....so sad =(

That can be malnutrition but it is also a hypothyroid symptoms. So are your fatigue and depression now that Kjas has me thinking about it.

Here is an "official" list of hypothyroid symptoms.

Open Original Shared Link

And here is a much more inclusive list from a woman who had to become a thyroid expert in order to regain her health.

Open Original Shared Link

Link to comment
Share on other sites
upwitht21 Rookie

Just spoke with the nurse (read the letter to me that the doctor is sending) she said my iron level was on the low side but doesn't think it's causing my symptoms. Vitamin d and b12 were both in the normal range. Thryoid levels were also normal. At this time she recommends that I consider an antidepressant as she feels that is what's causing my fatigue.....sigh I'm not going that route.

I started taking melatonin a couple nights ago also picked up fish oil, b12, and calcium for good measure lol. I'm going to be doing aloe Vera juice with this as it makes my skin feel better.

As soon as I get my actual test results I will double check everything but geez they sure don't want to help me unless it's to take an antidepressant.

Link to comment
Share on other sites
Skylark Collaborator

I HATE that. I flatly refused antidepressants last summer when I knew I was still hypothyroid even after they adjusted my meds. Damn pill-pushing doctors.

What was your TSH? The test is often misinterpreted. If it's over 3.0 and you have hypothyroid symptoms you might ask for an endocrinologist referral.

Link to comment
Share on other sites
upwitht21 Rookie

I don't know what the actual levels are, I will let you know when I receive them in the mail. I'm so sick of them ignoring me. I have another doctor I'm going to try who I guess is really a believer of all natural so I'm hoping he can help.

Link to comment
Share on other sites
Skylark Collaborator

The other thing to consider is that you might have more food intolerances. Dairy and nightshades are making me tired right now. It's a 1-2 days delayed reaction that continues for 3-4 days after I eat the problem food.

Link to comment
Share on other sites
Aly1 Contributor

Are you supplementing with zinc by chance? Too much zinc can make your hair fall out, it was happening to me till I found that out and scaled back my dosage.

Link to comment
Share on other sites
AVR1962 Collaborator

Just spoke with the nurse (read the letter to me that the doctor is sending) she said my iron level was on the low side but doesn't think it's causing my symptoms. Vitamin d and b12 were both in the normal range. Thryoid levels were also normal. At this time she recommends that I consider an antidepressant as she feels that is what's causing my fatigue.....sigh I'm not going that route.

I started taking melatonin a couple nights ago also picked up fish oil, b12, and calcium for good measure lol. I'm going to be doing aloe Vera juice with this as it makes my skin feel better.

As soon as I get my actual test results I will double check everything but geez they sure don't want to help me unless it's to take an antidepressant.

Good on you! You are on the right track!!

Link to comment
Share on other sites
Bubba's Mom Enthusiast

Having a copy of your test scores helps a lot. Being on the low side for iron can give you symptoms. It's sad, but Dr.s aren't trained in nutrition. It's an elective course, so they aren't much help in guiding you on supplements.

Their training is more chemistry related. They look for what chemicals(Rxs) will ease a symptom. A lot of them don't look for the CAUSE of the symptom. :(

In general, I think most people benefit from fish oil, D3, a good multi with Bs, and a calcium suppliement? Add in iron, if needed, and Glusosamine Chondroitin is wonderful for your joints if you have any aches and pains.

Once you heal more, you may not need supplements, but at first it's a good idea to take them.

Link to comment
Share on other sites
Katrala Contributor

You've already gotten good advice but I'd like to reiterate the "find another doctor" part.

If you aren't comfortable with your doctor and feel that he or she isn't listening to you, it's time to look for another.

Link to comment
Share on other sites
upwitht21 Rookie

No zinc and I'm seeing yet another dr sometime this week. Unfortunately my choices are pretty limited as we live in a small community and I can't go to a specialist without a referral, every doctor I've seen wont give me one because they don't feel I need it. They treat me like a hypochondriac...sorry I want to be healthy.

I watch what I eat very closely, only being a few months in I'm sure it's going to get better....eventually.

Link to comment
Share on other sites
upwitht21 Rookie

Very glad I listened to everyone on this board and did not go right for an antidepressant.

I took a pregnancy test today and was SHOCKED to see 2 lines! No wonder I'm tired lol my body is healing and growing a human.

Link to comment
Share on other sites
navigator Apprentice

Congratulations!!! :)

Link to comment
Share on other sites
Skylark Collaborator

I took a pregnancy test today and was SHOCKED to see 2 lines! No wonder I'm tired lol my body is healing and growing a human.

Congratulations! I hope it goes smoothly. I guess it's back to that prenatal vitamin, eh? :lol:

Link to comment
Share on other sites
upwitht21 Rookie

I never changed it lol! This was definitely not an intentional thing lol

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,496
    • Most Online (within 30 mins)
      7,748

    JamesDavid
    Newest Member
    JamesDavid
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...