Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Not sure I can do this :-(

Vasiliki

Recommended Posts

Vasiliki Rookie
Vasiliki
Posted

Good morning, 

You wonderful folks have been so incredibly helpful. I am turning to you once more. 

I finally found a doctor in my area that is willing to listen to my concerns. Well, she's a naturopath, but one of the top recommended in the city. I have an appointment with her on Nov 19th. 

Since Oct 4th, I've gone back to a gluten diet. Tracking what I eat and any changes I notice. I'm eating a sandwich a day, and eating out with friends again. 

At first it was just my gastro and skin symptoms that returned. Not too bad. But now has been the return of my most dreaded lifelong issues; A constant abdominal pain (about 5-6 on the pain level, flaring to an 8-9 at times) and my debilitating migraines. I didn't realize how much my diet had changed how good I felt until I went back. I was crying in the truck the other day because it brought back the realization that I've spent my whole life in pain, and I thought it / this was normal. That a stomach ache at around 5-6 on the pain scale was 'normal' for me growing up. 

After going gluten-free for almost a year, I realize how much better I felt. And going back to it feels so incredibly wrong. Like, wrong wrong. I feel like my body is desperately trying to tell me to go back. At Thanksgiving yesterday, I almost cried because I put a huge piece of garlic bread on my plate and all I could think about is: How bad is this going to hurt later...? Would the migraine flare up again until I couldn't walk?

Now I'm laying in bed, curtains closed, what feels like a fork lodged in my abdomen, texting my boss to tell her I can't stand up without getting vertigo. 

I feel like I cant do this until Nov 19th. It's worse than before. And my lovely Naturopath told me that if it feels this bad to stop, but if it's something I want tested then that's my choice. 

Have any of you done the gluten challenge to try and get a positive? Is it worth it? 

Cause right now... I feel the worse I've felt in a long time. Even my husband has noticed I'm not my usual self

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

Celiac.com Sponsor (A8-M):


RebekahLynn Newbie
RebekahLynn
Posted

We recently tried to with my daughter. It is my understanding that you really are supposed to eat for 12 weeks before testing. We made it to 4 weeks and tested. It was negative. Unfortunate because we needed the medical documentation but we will not be trying to make the 12 weeks. 

nvsmom Community Regular
nvsmom
Posted

Not every one can make it through a gluten challenge.  Two to three months of sickness is no fun.  :(  If you can't get through it all, test immediately after going gluten-free.  You might have a detectable antibodies, a positive is a positive.  If it is a negative, then it is celiac disease or NCGS most likely.

Good luck.

Vasiliki Rookie
Vasiliki
Posted
  • Author

Not every one can make it through a gluten challenge.  Two to three months of sickness is no fun.  :(  If you can't get through it all, test immediately after going gluten-free.  You might have a detectable antibodies, a positive is a positive.  If it is a negative, then it is celiac disease or NCGS most likely.

Good luck.

It is harder than I ever imagined :-( I'm supposed to be seeing my naturopath on Nov 19th, but I honestly don't think I could make it that long. My symptoms are bad enough that they are starting to cause me to miss work again because I can't stand up.

So I called up an MD that is taking patients in our local area, and I'm just going to go in and lay it on the line. Send me for blood tests, even though it's only been 1.5 months at high doses of gluten. Get it on the books. Get a referral for a derm. Explain to him that the medical system has let me down too many times in the past, and he can either help me or I'll find someone else.

I think I've just hit that wall.

 

It also doesn't help that my mom and I had a heart-to-heart the other day, and she proceeds to tell me:
"Oh our family has always had stomach issues. Did I ever tell you I was hospitalized as a baby because I couldn't digest formula? It's true! I was actually one of the infants they developed rice-based formula's for because anything else would leave me screaming and throwing up and failing to thrive!"

Me: "Are you kidding me? Isn't that what happened to me too?"

Her: "Yep, you too. Once we switched you to rice formula or formula without wheat, you were fine!"

Me: "Sooooo did you ever think to get me tested as a child for an allergy, or celiac?"

Her: "It crossed my mind a few times as you were growing up, but the doctors told me it was probably just lactose issues"

Me: "What about you? Did they ever want you to get tested?" (She's had LIFELONG issues that mirror mine)

Her: "I think so... Meh, never got around to it"

Uggggghhhhhhh Moommmmmmmm seriously?! I'm 28 and had these issues since I was in kindergarten! Only NOW it comes up that doctors recommended you be tested for Celiac and that I have identical issues to you?!

 

Just a wee bit frustrated at the moment

nvsmom Community Regular
nvsmom
Posted

Just a wee bit frustrated at the moment

(((HUGS)))

Vasiliki Rookie
Vasiliki
Posted
  • Author

(((HUGS)))

Thanks ((((((nvsmom))))))

Update:
Today I went to see this new MD. Apprehensive. So I wrote out three pages worth of notes to make sure I didn't miss anything. Wrote down the tests you had all recommended and a few other things. Walked in, he asked what brings me in. I tell him 3+ years ago I began tracking my diet due to symptoms, that going gluten-free for 1yr resolved nearly them all. Reintroducing it has seen a return of symptoms, so I think it may be time to get tested for Celiac. I left it kind of open-ended, seeing what he was going to say. I didn't even really use my notes, just a few minutes of listing off things I've noticed over the years.

He responds: "Sounds like you are gluten sensitive, if not Celiac. We will send you for all of these tests, and if they come back negative, I am still going to say you should eliminate gluten from your diet as these tests aren't always 100%. Based on your symptoms, it's obviously not good for you. And the tests sometimes don't catch all Celiacs. Lets get you checked out"

So he orders up blood work and asks if I'm okay with getting a whole bunch of things checked at one time. Well, absolutely!

Hands me the lab order and says he'll talk to me soon about it. Sends me on my way in less than half an hour.

I left the office and sat in my car and cried. Fighting for years with other doctors, and this one actually 'gets it' within minutes.

As sick as I've been trying to do this gluten challenge, I'm so so glad I did.

squirmingitch Veteran
squirmingitch
Posted

That is great!!!!! I'm glad you finally found a doc that has a brain. Let us know what happens please.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Yay!!!! :)  I'm really happy for you!  That doctor sounds like a keeper.

Let us know how your tests go.

Vasiliki Rookie
Vasiliki
Posted
  • Author

Update:

According to my doctor, all tests came back "Normal". However, I will be going down to the office today to hopefully pick up a copy of the labs for my records.

I kind of figured as much, as it was not 3+ months of glutening myself. The blood test was done after 2 months, because I just couldn't do it anymore. It was getting bad enough to start missing work again, which is not worth it just to get a positive on a test.

I have since returned to my gluten free diet after the blood test. I know I can't get a positive from this point, but honestly, I couldn't handle it. My brain fog returned, my depression symptoms returned, joint paint, my weird itchy rash /lesions on my legs, hips and abdomen, crippling fatigue and abdonimal pain that would leave me sweating in a fetal position on the bathroom floor. Nothanks.

I'm still keeping my naturopath appointment for Nov 19th, since she's specialized in a variety of 'allergy' and gastro issues.

MD told me that, based on my symptoms and the 3 years of documentation, he would very strongly suggest just going gluten free and forgoing anymore testing. He said that he strongly agrees that it may be Celiac, but that if I'm okay just going gluten-free, skip the ordeal and just switch.

Another avenue we discussed briefly was getting in with a dermatologist to get my lesions tested. However, there are two problems:

1.) The rash only appears when I do BIG doses of gluten, and the idea of doing that makes me almost want to cry. And even if I have large doses of gluten for a while, it doesn't always 'flare up' on cue. Sometimes it's the day after. Other times it'll show up several days later with a vengence.

2.) No dermatologist office I've called is familiar with DH or how to test for it. The local Celiac association doesn't have any references either and told me they can't recommend specific doctors due to legal reasons.

I'll try to pick up a copy of my labs today so that I can check them out and hopefully share them here.

At least I can officially say that my MD "strongly suspects a gluten sensitivity or Celiac". So, at least I have someone officially on my side.
 

What will I do next? No idea. Right now I'm just thankful I can finally stop forcing myself to eat bagels and sandwiches LOL

nvsmom Community Regular
nvsmom
Posted

I'm sorry you didn't get any firm answers.  Is your doctor going to add non-celiac gluten sensitivity and possible celiac to your file? It could be helpful to have NCGS as a firm diagnosis and celiac disease as a possible diagnosis.

I'm glad your doctor is on board with the gluten-free diet.  I hope you recover quickly!

CeliacBurger Newbie
CeliacBurger
Posted

Hello. Did he order the one that starts with a D? Because I only showed positive on that one. I was negative for all the others. But that's sufficient for a diagnosis from what I understand  

The other thing I wanted to mention is that there are other forms of autoimmune response to foods.   It's not just gluten and nothing else. There are several other wheat proteins in these types of foods that could be causing an autoimmune reaction for you. One that's very similar. It's something that Chris Kresser constantly mentions. Gluten is just one of many possible reactive proteins.

So I wouldn't say you don't have an answer. The fact that you felt better off of it, and felt worse when you went back, means you've got your diagnosis. Be confident in that.

It's really sickening to me that traditional doctors are such a useless waste of time. Frustration. And source of anger for all of us. But this is the reality of the current medical system. Fortunately the information through websites like this, is getting out to the lay people. They no longer hold the monopoly on medical information. And they hate that. 

  • 3 weeks later...
Vasiliki Rookie
Vasiliki
Posted
  • Author
On 2015-10-24, 9:14:27, nvsmom said:

I'm sorry you didn't get any firm answers.  Is your doctor going to add non-celiac gluten sensitivity and possible celiac to your file? It could be helpful to have NCGS as a firm diagnosis and celiac disease as a possible diagnosis.

I'm glad your doctor is on board with the gluten-free diet.  I hope you recover quickly!

 

On 2015-10-31, 11:20:45, CeliacBurger said:

Hello. Did he order the one that starts with a D? Because I only showed positive on that one. I was negative for all the others. But that's sufficient for a diagnosis from what I understand  

The other thing I wanted to mention is that there are other forms of autoimmune response to foods.   It's not just gluten and nothing else. There are several other wheat proteins in these types of foods that could be causing an autoimmune reaction for you. One that's very similar. It's something that Chris Kresser constantly mentions. Gluten is just one of many possible reactive proteins.

So I wouldn't say you don't have an answer. The fact that you felt better off of it, and felt worse when you went back, means you've got your diagnosis. Be confident in that.

It's really sickening to me that traditional doctors are such a useless waste of time. Frustration. And source of anger for all of us. But this is the reality of the current medical system. Fortunately the information through websites like this, is getting out to the lay people. They no longer hold the monopoly on medical information. And they hate that. 

I also included strict reduction in eggs and milk (to make things easier on my system right now). However, it seems to be gluten that causes a huge huge reaction. Eggs might make my stomach hurt, but not nearly as miserable as when I have bread-based products.

After the testing phase, I went strict celiac diet. The itching on my legs, back of my legs, hips and spots along my body were INSANE!! Waking me up in the middle of the night. I was going mad for about 2 weeks afterwards. Just when I thought it had stopped, it would flare up again dramatically (and I would realize I misread a label or something).

Since becoming really strict, I've had no more horrendous itchy spells. No more new lesions on my lower legs or hips :) No more waking up scratching.

Best of all? My husband noticed a difference. He was very supportive from the beginning. But as he noticed I was staying awake, that I wasn't scratching, that I wasn't curled up in the passenger seat after going out to eat with friends, he fully agrees I'm better now than I have been our entire relationship. My moodswings have calmed down. My energy has absolutely skyrocketted. My migraines have stopped completely. My depression symptoms have stopped, which got scary sometimes. I haven't thrown up! And... (lets get graphic here)... I haven't almost pooped myself in a while LOL! Cause you guys needed to know that! But it's true! No more mad dash in the middle of the night.

I started crying in a restaurant the other day (just quietly to myself) and my husband asked me what was wrong, did I eat something wrong. I had to tell him I didn't realize how much feeling yucky had robbed me of wonderful evenings with him. That up until recently, going out to a restaurant had always left me wondering how long afterwards I would 'get hit' and have to go to bed.

Last night, after eating at The Keg (with an amazing waitress who knew what celiac was, and the manager was incredible) I was able to stay up with my husband and play video games instead of being sick in bed.

I don't care if I don't have a 100% diagnosis. I know in my heart and soul that this is what was making me sick my entire life and I will absolutely never ever go back. Ever.

RMJ Mentor
RMJ
Posted

I am happy for you!

nvsmom Community Regular
nvsmom
Posted

:)  Yay!  Just wait a few months and then you'll be even better off!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.