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

Need Second Opinion?

CamiJ

Recommended Posts

CamiJ Newbie
CamiJ
Posted

I'm still struggling to find an answer to my abdominal (etc!) problems. I really thought that the celiac symptoms fit everything that I've been experiencing - so the negative biopsy really threw me off. Here's the problem though: I just talked to the gastroenterologist on Friday and I asked him how it was that he thought he saw duodenal villi flattening (and marked it on his report), but the pathologist didn't see it? He showed me the pictures of my small intestine - showed the areas with cracked mud appearance, told me that it didn't look like a healthy intestine should. He said he thought it did look like celiac, and he took 6 biopsies. However, the pathologist's report said that the villi looked completely normal with no blunting or increase in inflammatory cells. My GI said that he cannot diagnose celiac just because the villi looked abnormal, but that the diagnosis had to take place on a microscopic level (the pathologist's area of expertise). I know that's right, but I just wonder.... Could he have missed it? My GI doesn't believe that food intolerances exist, and he says that true food allergies are very rare, so he ruled out the possibility that wheat or anything else could be making me sick (because I do not have anaphylactic shock reactions). Anyway, he wants to treat me assuming it's IBS (he admitted he has no idea what's making me sick - so he diagnoses IBS by default and goes into medication experimental mode - with me as the test subject). He said to take Immodium every day for the diarrhea - even if it's for the rest of my life! I'm beyond frustrated at this point. He's looking only at the abdominal problems in isolation (ignoring the other symptoms I'm having), and he's telling me to just get a handle on my stress and maybe the diarrhea won't be as bad. At this point, I'm feeling like I'm very alone - I am planning to go off dairy for the next month, and add gluten-free the month after that and hope for some results. I'm disregarding the GI's advice to take Metamucil, yogurt pro-biotics, and Immodium. I will try to manage the stress better, and I am going to try to eat more healthily. I just don't think that the dr's advice will help me right now (because I've done all of his advice before when I got my first diagnosis of IBS as a teenager - and it didn't help at all). I guess I'm hoping for some validation - or at least a voice of reason. Do I have a chance at solving this on my own, or should I trust the guy who saw what my insides look like and has a medical degree? My husband thinks that I should listen to the doctor - he says it might work this time. I went off gluten for a week, and quit because I didn't feel better, but then last week (back to normal diet) was horrible. I felt much worse than I had on Gluten-free Casein-free diet. So, I thought I should give it more time....Do I need a second opinion though on the endoscopy?

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

Ok I just had to reply because I feel SOOOOOOOOOOOOOo sorry for the people out there, including you, that are getting this load of... from their doctors. Then when you got to the IBS part I really was losing it thinking of all the little old ladies in the nursing home that are dying by the day with the gluten loaded nutritionless glob that they are being fed three times a day.

Yep, YOUR common sense is all that you are going to get to help you here. That and the fact that you have seen with your own eyes that you do not have healthy villi.

If I were you I would be running to start a gluten-free diet and yes, go dairy free also & soy free. Are you having a problem with dairy? That is a big tip off that you also have a problem with gluten.

You will have to do your own reading & research to decide what you need to do. Obviously your doctor(s) would just keep you with the IBS & running to their office at least once a month or more. Then you will get a couple of other auto immune illnesses & then you will be sick, you might get senile early... You should read some of the horror stories that women post on other boards of all their auto immune illnesses & having the colon removed & having new shunt surgery - & they do not heal on & on & how it all started with IBS, then they got Crohn's etc etc. I just want to scream - quit eating grains, but I do not because they are so far gone that they are unable to think for themselves. The doctors dictate their life & their untimely deaths.

There are people on here, also that have posted their diagnosis nightmares & some finally figured it out on their own befroe they died. Many are not so fortunate...

I would say to start googling & get yourself some books on gluten intolerance/celiac. I suggest "Dangerous Grains", "Celiac the Hidden Epidemic". "Good Calories Bad calories" by Gary Taubes is not a gluten-free book - but well worth a read - for everyone... There are many books out now...

good luck - by the way, some people call IBS, I Be Stumped disease...

Gutbomb Rookie
Gutbomb
Posted

I totally feel your pain. I was diagnosed with UC from one doctor then IBS by the next doctor. I too was told there was nothing he could do for my IBS except antispasmotics, immodium and SSRIs, I take Lexapro. Unlike most IBS people I have no trigger foods. I can eat soy and dairy no problem.

As long as I stay on lexapro I have very few symptoms. I went off the lexapro to try and get pregnant and the symptoms seem worse then before. I finally asked my regular doctor to test me for a wheat intolerance or allergy. I took wheat out of my diet when I started the south beach diet. When I tried to add it back it I got really bad headaches. When I tried to eat bulgur they had to send me home from work I was so sick.

I will get the blood results tomorrow.

Good Luck!

Rachel--24 Collaborator
Rachel--24
Posted
....Do I need a second opinion though on the endoscopy?

It cant hurt to get a second opinion on the biopsy....I would do it just for peace of mind.

Have you had the bloodwork done? If not it would also be a good idea to do that. Many people have positive bloodwork and negative biopsy...and vice versa.

If you're done with the testing there's nothing stopping you from starting the diet. Definately eliminate gluten and see if it resolves your symptoms. If it does....you have your answer.

In my opinion probiotics are a good thing. The GI may not be informed about alot of things....but probiotics arent a bad idea. You can get them in capsules since you are elimininating dairy (there are some which are dairy-free). Of course you also need to get to the root of the problem....whether its gluten, dairy or something else.

There are alot of things which can cause irritation/inflammation to the intestines.....not alot that would cause flattened villi though. Could be that the GI wasnt too sure about what he was seeing....could have been that the pathologist made an error....it could have been that the damage is patchy and the 6 samples were taken from areas with no damage.

Thats why I would probably go ahead with the second opinion....to rule out an error on the pathologist's part.

IBS is not a legitimate diagnosis...but it sounds like the GI acknowledged that (sort of). :rolleyes:

Rachel--24 Collaborator
Rachel--24
Posted
I really was losing it thinking of all the little old ladies in the nursing home that are dying by the day with the gluten loaded nutritionless glob that they are being fed three times a day.

You should read some of the horror stories that women post on other boards of all their auto immune illnesses & having the colon removed & having new shunt surgery - & they do not heal on & on & how it all started with IBS, then they got Crohn's etc etc. I just want to scream - quit eating grains, but I do not because they are so far gone that they are unable to think for themselves. The doctors dictate their life & their untimely deaths.

Personally, I dont feel that people in nursing homes are dropping like flies because they're eating "gluten loaded nutritionless glob". People die for reasons having nothing to do with gluten.

Some of them are probably eating better and getting more nutrition than some younger people who are consuming processed foods (loaded with chemicals) for breakfast lunch and dinner...with sodas in between. Not every person is having problems with gluten....however a diet filled with chemicals is not good for anyone.

There are plenty of people who are gluten free and even grain-free who continue to have health problems and who continue to develop autoimmune disease. Not every incidence of autoimmunity is caused by gluten.

Alot of things aside from gluten can cause damage to the intestinal lining...and this ultimately opens the door for autoimmunity.

I see people on this board and others who are on very restricted diets (gluten free for years) and still having alot of health problems. I dont think we can blame every autoimminue disease, or every occurance of IBS, or every death on gluten (or grains in general).

CamiJ Newbie
CamiJ
Posted
  • Author

Thank you all for your input. I do think that the pathologist was not in error. I've just been uncertain about the results because of what the GI said he saw, and what he showed me. I've been looking up pictures of blunted villi on the internet, and my own pictures do not look like the healthy slides. They're not completely scalloped in appearance, but they're more like the unhealthy than the healthy. My only thought is that the biopsies were from undamaged areas, or that the areas that appeared to be damaged were not really damaged. Anyway, I don't think I can afford to get another opinion even if I wanted to.

I think that part of my frustration is stemming from a basic difference in beliefs and practices between me and the doctors I've been seeing. They want to treat my symptoms and "manage" my problems. I want to be cured or healed of my problems. If I were taking all of the medications I've been prescribed to treat my symptoms, I would currently have:

anti-dizziness pills

anti-depressants

pills to help me create my own tears (for dry eyes with irritated bumps)

steroid nasal spray

nasal decongestant pills

hormone creams

headache pills

digestive aids (lactaid, fiber supplements, anti-diarrheal, anti-inflammatory)

acid reducers

teeth sensitivity medication

I know that this list is mild compared to what many of you have had to treat, but it seems like a lot to me! I'm 28! I'm a runner (when I'm well). I'm not addicted to any substances. I should be healthy. I'm concerned that if I just take the meds the different docs are telling me to take, the problems will not go away - they will just be covered or "managed". I will continue to get more and more sick. None of these meds fix problems - they just treat them. The reason I'm not taking any now is because so many of them have given me nasty side-effects, and they have not even helped. I checked out books from the library about all of the different symptoms I have, and the one common thread they all have is a food-related allergy or intolerance. That's just got to be it! (Or, all of my bodily systems are just coincidentally falling apart at the same time in a completely unrelated way - at 28!!!) I'm frustrated that the different doctors are only interested in their specialty (and the family practice doctors say depression is to blame), and they're just SO helpful: "take this pill, and you won't care anymore and it won't bother you so much! I don't know why you feel the way you do, but you'll feel better if you take this." Maybe I should just jump at the chance to feel better, but it just doesn't feel like the right answer, ya know? I feel like they're missing something important...If I take their advice, they admit that I may be taking these medications for the rest of my life. "We don't know why this happens, and there is no cure. This is just the way you are. You're perfectly healthy, but your body is just hypersensitive."

By the way, my celiac panel was negative. New symptom today: itchy rash on my arm. Lovely. It sounds like a gluten or dairy problem to me (or both), but I don't know. I just don't want to get this wrong because I'm losing my ability to do anything.....How much longer will I have my wits about me to try to figure it out? I really hope this works!

fedora Enthusiast
fedora
Posted

go off gluten now and give it time. One week is not long enough for someone who is sick. You will mess up at first, we all do, so sometimes you may get sick. But soon you will know. There is no one making you eat gulten.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It won't do any harm to have another path look at the slides.

You don't need the doctors permission to eat gluten free. You do need to give it more than a week. You need to do it strictly for at least a couple of months. It is a good idea to go dairy free as well. You have nothing to lose at this point.

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):

  • Who's Online (See full list)

  • 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.