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:
    Support Our Content
    eNewsletter
    Donate

We Did The Biopsy....thank Goodness It Is Over

LauraW

Recommended Posts

ryebaby0 Enthusiast
ryebaby0
Posted
Hi, Joanna, do you live in or near Pittsburgh?

Actually, we are about 3 hours away --- closer to 4 in the winter, or when PennDOT is busy tearing up Rt. 22! We're quite a bit east of the 'burgh

j.

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

Celiac.com Sponsor (A8-M):


lcmcafee2 Newbie
lcmcafee2
Posted

She has the MRI first and I believe they are doing a contrast so that will be another needle. They have said the sedation willl be the kind that I can be there with her almost the whole time. Then the next week is the scope and the sleep medication. I believe they plan to put the IV in to put her to sleep with. We have to be there a half hour earlier for them to use some kind of cream on her arm to make it easier or less painful.

Last week she got a flu shot. The nurse ask her if she was going to cry ... Julie just looked her in the eye and said "I don't cry, but I fight!" I counted the folks in the room, totaled four and hoped that was enough! She actually did very well. I held her and she got the flu shot without any more comments or actions ..then marched herself out of the room.

My family mostly think I just want someone else diagnosed "with me" so I am not the only one with Celiac in the family. It angers me for that. Julie is our granddaughter we have had custody of since birth. I KNOW her. I quit my job to stay home with her and her brother (10 months older than her) This child has been on prevacid for a year now with some improvement. At least she isn't throwing up once or twice a week. It has improved to 3-5 times a month. Back in June of 2005 this is a quote of what I got when I asked for her results of the tests.

Labs: Amino Acid, Serum - Normal; IGF - I 72; Normal bone age; Cortisol 11.5; T4, Total 9.3: TSH 1.130' IGFBP - 3 2.1

She just had another set of labs done and I have yet to hear about them. It is almost like pulling teeth to get them to send me a copy of the results.

She has insomnia and it wasn't until she turned 5 (last month) that she actually stayed in her bed and slept the night. Now at least half the time she sleeps through the night. I feel she needs the diagnosis confirmed or ruled out in case we need to enforce what she eats for when she goes to her mothers. If she has to be gluten free her mom would not abide by that unless we had documentation.

Sorry for running on so .... I am just getting stressed about this for her.

Laura

lcmcafee2 Newbie
lcmcafee2
Posted

Well Julie had the MRI yesterday and the nurses were great. They put the cream on the back of her hands, so when it came time for the IV she didn't even react. (It took five of us to get the hand bone x-ray done last year... she went crazy) After the first two medications they put in she drifted out ..... She was a real trooper! Once we got home she wanted chicken noodle soup so I fixed her some and she has been throwing up when she drinks/eats ever since. This morning I am going to call the doctor for something for the vomiting, since I am not sure this is from the medication or the gluten from the noodles. Monday she will have the biopsies. I sure hope we start to get some answers. Her weight is still at 29 pounds and we have been pushing a high calorie diet for 2 months now. Anyone know how long it takes the biopsies to come back? In the hospital, right after my scope they told me to go gluten free, do they do that for the kids?

Laura

LauraW Rookie
LauraW
Posted
  • Author
Well Julie had the MRI yesterday and the nurses were great. They put the cream on the back of her hands, so when it came time for the IV she didn't even react. (It took five of us to get the hand bone x-ray done last year... she went crazy) After the first two medications they put in she drifted out ..... She was a real trooper! Once we got home she wanted chicken noodle soup so I fixed her some and she has been throwing up when she drinks/eats ever since. This morning I am going to call the doctor for something for the vomiting, since I am not sure this is from the medication or the gluten from the noodles. Monday she will have the biopsies. I sure hope we start to get some answers. Her weight is still at 29 pounds and we have been pushing a high calorie diet for 2 months now. Anyone know how long it takes the biopsies to come back? In the hospital, right after my scope they told me to go gluten free, do they do that for the kids?

Laura

Hi Laura,

I am so glad it is over for you guys. I'm sure it feels like a weight has been lifited off your shoulders. My dd actually did great from the anesthia and didn't get sick at all, so I would definitely call the dr and get some phenergran or something that will help her. I would think it was probably from the anesthia, not the noodles, but definitely call the dr. My dd's biopsy was on a THursday and he called with the results the next Wednesday. So 3-4 bus days I would think. My doctor did not say go gluten free until results came back, however, it sounds like your dr thinks there is a good chance Julie does, so I would probably go ahead and start now. I just wanted also to comment on your last post as well. It sounds like you are doing a wonderful job raising your grandaughter and that you are a hero in my eyes. She is very lucky to have you (I'm sure she knows that) and I hope it all works out with her mom following the rules with her diet. It won't take long to figure outif she is not. She will either tell you or get sick. Please keep us posted and I am glad it is all over for you.

Laura

lcmcafee2 Newbie
lcmcafee2
Posted

Laura,

Actually it is only half over. The Endoscope is Monday. I am hoping it goes as easy as the MRI! I will post and let you know when we get the results from that.

Thanks for the words of encoragement, means a lot, and I appreciate hearing them.

I hope you get answers for you and your daughter. Didn't I read that you were thinking of checking into having the biopsies? If you go the the GI and have the biopsies and they come back as Celiac that would definitely give you direction for your daughter. The waiting... testing.... waiting... explaining.... yadda.. yadda.. yadda.. makes it so frustrating. I have been gluten free for a few years now and for me just putting a name to the symptoms was a relief.

Thanks again,

Laura

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Just a heads-up here--I read on some of the other threads that some of the members of this board have been denied life insurance and HEALTH CARE COVERAGE after being diagnosed as celiac.

We all know how deeply flawed our health care system is. Unless you really think you will learn about a diagnosis other than celiac from an endoscopy, or if you don't believe in the diagnostic ability of a positive response to a gluten-free diet, you might want to wait on an endoscopy, especially if there is any chance you might be moving or switching insurance companies.

Either way, good luck!

LauraW Rookie
LauraW
Posted
  • Author
Laura,

Actually it is only half over. The Endoscope is Monday. I am hoping it goes as easy as the MRI! I will post and let you know when we get the results from that.

Thanks for the words of encoragement, means a lot, and I appreciate hearing them.

I hope you get answers for you and your daughter. Didn't I read that you were thinking of checking into having the biopsies? If you go the the GI and have the biopsies and they come back as Celiac that would definitely give you direction for your daughter. The waiting... testing.... waiting... explaining.... yadda.. yadda.. yadda.. makes it so frustrating. I have been gluten free for a few years now and for me just putting a name to the symptoms was a relief.

Thanks again,

Laura

I'm a ding dong! I obviously can't read, b/c you put in your post MRI and I guess I was thinking biopsy the whole time. Please keep us posted next week with the biopsy. Yes, I saw a GI yesterday and they are going to run my ttg's, since the only bloodwork they did on my was the antigliadin IGG and IGA (both were positive). He does think I should be scoped just to make sure, even if it is not celiac, that something else isn't giong on. Most definitely, yes, I will have a clearer direction with my daughter, if I do have celiac. In one sense, you don't wan't this life long disease, in another, it gives you answers you have been searching for for years. Keep us posted Laura!!!

Laura

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted
Just a heads-up here--I read on some of the other threads that some of the members of this board have been denied life insurance and HEALTH CARE COVERAGE after being diagnosed as celiac.

We all know how deeply flawed our health care system is. Unless you really think you will learn about a diagnosis other than celiac from an endoscopy, or if you don't believe in the diagnostic ability of a positive response to a gluten-free diet, you might want to wait on an endoscopy, especially if there is any chance you might be moving or switching insurance companies.

Either way, good luck!

raising hand, me... I was denied health insurance because of the Celiac dx on my permanent health record and I didn't even have the biopsy.

zachsmom Enthusiast
zachsmom
Posted
Hey Everyone!

Wanted to give you guys an update on the biopsy yesterday. Well, thank god it is over. That is all I can say. Now...let me just say I hope I never have to do that again with my child, by far it was the worst day of our life yesterday. So traumatic on Ainsley (my daughter), me and my husband (he could barely hold back the tears). I will say it was very short (like 15 minutes total) and no pain at all afterward or any side effects whatsoever, but let me tell you about the I.V. It sucked big time!!!! From the second we got back to the area with beds where they prep you, she was terrified saying she was scared screaming hysterically (which I could not help but cry myself) even when they put the gown on her or put the toe thing on her to read her stats, it didn't matter, she screamed. THen they took us to the operating room, where she freaked out even more and I started to lose it myself. THey did not mask her first b/c evidentally it is a different anesthesia which can be a bit riskier and this hospital won't do it that way. Who knows if there is truth to that or not. So everyone basically held her down while she screamed for her daddy (god it was heartwrenching), but as soon as the IV went it, they put the meds in her and she was out and when she woke up she was great and did fine the rest of the afternoon as if nothing had happened. The amount of guilt you couldn't even put into words but the dr was great and made us feel much better about it. Because I explained that my parents were not supportive and basically think this is nonsense and that they can't believe I would do the biopsy. He said "well, you can do several things: one, ignore the bloodwork and not do the biopsy and she might get sicker and not grow properly, you can not do the biopsy and do the diet when you might not have to if the test is negative or do the biopsy and we can see what is going on and you can be at peace with a relatively certain diagnosis and move forward". He said he has a 3 year old and a one year and wouldn't think twice if he suspected they had it. I needed to know, b/c not all of the bloodwork came back + but there are indicators of celiac in her Igg and immunoglobins that say she could have this. Some people would disagree with my decision, but I just prayed alot and came to peace with the fact that life does have certain risks in it and that I needed to do this to get more information to best take care of my daughter and thankfully in my case, there were no complications. Afterwards, he said that the intestine looked relatively normal, however, he thinks she probably does have celiac disease and that her stomach looked a little pale and that he took a biopsy of that as well to be on the safe side. That also made me feel more at ease about my decision to do it b/c what if something is wrong with her stomach and we never knew. Anyhow, we should know something on Tuesday so I will keep everyone posted. Oh and my mother is still hardly speaking to me b/c of all this. Quite ridiculous really.... I just want to thank you guys for the overwhelming support and kind words you have sent our way. It has made this very stressful time easier and hopefully kept me from going into labor early. Which yesterday, there were a couple of moments I thought they might have to go ahead and admit me.

Laura

Laura your mom will get over it. You have to do what you think is best. I support you.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,410
    • Most Online (within 30 mins)
      7,748
    Nicola mcculloch
    Newest Member
    Nicola mcculloch
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By ElisaL · Posted

      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Ocd making gluten fears unmanageable. Need advice

      By Wends · Posted

      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...