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

Good News, Bad News.......

MomGoneRunning

Recommended Posts

MomGoneRunning Rookie
MomGoneRunning
Posted

My GI just gave me a ring and said that the pathology results came back as normal, not indicative of Celiac Sprue, but that my "issue" is most likely IBS. :angry: I don't know if this should make me happy, or if I should be more frustrated.... Part of me says "Good! You don't have an autoimmune disease! That's good Jess!".... But the other half of me wants to cry. :( My body is not right and I have exhausted all of my means to "fix" it. Is it possible that maybe my villi are not reflecting any damage yet due to the fact that I've only had the symptoms for 7ish months? I would assume that would be irrelevant, damage will be done with or without symptoms. I am so frustrated. I don't know what else to do to help myself, other than going gluten free and seeing how I feel after that. I'm sorry this is such a whiny post. But I know many of you have possibly felt the same way.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I'm sorry you came up negative, and it's quite okay to whine here. We do it all the time when we are not wining!! Welcome to the board and the frustration of no diagnosis.

Yes, the next thing to do is to pretend that your diagnosis was positive and to go strictly gluten free for a good three months. You may be what some refer to as "merely" gluten intolerant, or you may not have built up to full-blown symptoms yet. Either way, give the diet a good trial, and chances are you will feel a lott better, diagnosis or no

Tusofsky Newbie
Tusofsky
Posted

I know how you feel. It's one of those things where I'm not sure if I should say "I'm sorry :(" or "Yay!" because, urg. IBS is more of a symptom, it means something is causing it. Did you doctor not give you any suggestions or did they just leave you with "Probably IBS"?

I'd take Mushrooms suggestion (It's my plan if I hear something similar) on testing how gluten free has an effect on you, if you get better.

Hope you do! Soon!

rosetapper23 Explorer
rosetapper23
Posted

Okay, so you're talking about your endoscopy, right? How about your bloodwork? Was it positive for celiac? If so, disregard the biopsy--you have celiac. I won't expand on this unless you say that you didn't have bloodwork or it was negative.

Can you please give us the whole story? So....don't be too sad just yet, okay?

MomGoneRunning Rookie
MomGoneRunning
Posted
  • Author

Yes, I am talking about my upper endoscopy with small bowel biopsies. Apparently my GI only took two as well. *scratches head* I thought he would take more, considering. But I don't feel as though he was really at all concerned with helping me to begin with.

Hum, whole story? Symptoms and all? Here is a link to my very first post, it lists my symptoms and gives you a back story....

My TTG IgA/IgG results is what is kind of throwing a wrench in everything. No one really knows what to make of it because I have yet to get any answers as to why a IgA would be normal with a IgG a definitive positive. Does that answer your questions? I'm sorry I wasn't very specific in my initial post. My mind is in a hundred places at once and I'm just frustrated. What is your personal opinion of my TTG IgA/IgG results?

Skylark Collaborator
Skylark
Posted

You still might be celiac. Two biopsies isn't enough, as you already know, especially if you're early on developing it. Damage is typically patchy. Also did you see the biopsy report? Did it mention increased intraepithelial lymphocytes or any abnormalities? Your doctor seems to not want to really consider celiac so he might have downplayed the early signs of it.

You're done with your testing so go off gluten. It's very likely to help you feel better.

mommida Enthusiast
mommida
Posted

Get off the gluten and see if it helps. :)

New information is coming out about the "negative tested patients that improve on a gluten free diet". The medical community is taking another look. There has been too much of a positive improvement for too many patients. (It seems especially strong in nuerological affected individuals.)

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

I agree with others above -- completely remove gluten for a period of at least three months. Many have negative blood and/or endoscopy and improve when they remove gluten -- my kids and grands all did.

MomGoneRunning Rookie
MomGoneRunning
Posted
  • Author

Thank you all for your advice, opinions, and kind words!I am cleaning out my house as we speak of gluten and intend to see how I do myself off of gluten. It seems to be the most logical step to take next. Once again, thank you all for everything! :D

Cara in Boston Enthusiast
Cara in Boston
Posted

Just wanted to share our experience because some is similar to yours.

Last year my son (6) with almost zero symptoms was tested for celiac disease. His blood tests came back weird. All IgA tests were perfectly normal (including total IgA), his Gliadin IgG and TTG IgG were both elevated. MD sent him to Pediatric GI for further testing. Since it looked like he may have celiac disease, I started learning about it and realized I had had many, many of the symptoms for the past 5 or 6 years - ever since I was pregnant with him! (pregnancy can be a trigger). I got tested too and my IgA levels were all very high.

Son's GI did genetic test and DGP tests . . .genetic test show LOW probability and agin, the IgA tests were fine, IgG were up. He concluded that son did NOT have celiac disease. (he told me I had read too many magazine articles . . .)

I went to adult GI and was told that based on my symptoms and blood tests that I DID have celiac disease. A biopsy was scheduled, not to confirm the diagnosis, but to have a starting point to monitor my healing.

At this time it just seemed weird that I would have it, but my son - who was tested first, didn't. So I took him to a Celiac Specialist and she was concerned about the IgG levels. She did a biopsy and found him to have extensive damage.

I had my biopsy and had NO DAMAGE AT ALL. My doctor then reversed his thinking and said I was fine. Probably IBS . . . maybe the original blood tests were wrong, etc. etc.

So now it is even weirder that I have the symptoms, I have a son with it, and I just have IBS? Really?

Anyway, we both went gluten-free and all my symptoms are GONE. Son doing great too. At follow up visit with my doctor, he "officially" diagnosed me with gluten intolerance. Whatever.

My son's doctor (celiac disease specialist) said that is a lot of hooey. Blood tests aren't elevated for no reason at all. She said I obviously have it and maybe just not long enough for damage to show. The biopsy can be wrong, especially if they don't do 7-10 samples.

So, I would think you have it - or at the very least, are gluten intolerant - based on your IgG test results. Go gluten free, be strict, and see if you don't feel better in a few weeks. Don't forget that you may feel worse at first (I did, son did not) but keep going. Give it a good 3 months and don't cheat. You will be very pleased with the changes you see.

Hope you are feeling better soon.

Cara

MomGoneRunning Rookie
MomGoneRunning
Posted
  • Author

Wow. You poor thing! It's just not right to be dismissed by doctors as having "read too many magazine articles" or to just disregard you with out a good reason. I'm so glad you finally have things figured out for both you and you son. I really do feel like this is my problem. Its very hard though with out a Drs support, to sort of be disregarded as having read too much or just be plain crazy, like you said at the very least I am non-Celiac gluten intolerant.. I am a dietetic student and even my Community Nutrition professor says that to be "allergic to gluten" is just a fad, with the exception of actually having Celiac Sprue. Its frustrating. Thank you for sharing your story! It's comforting to know that I am not the only one out there who has had these sorts of "go-arounds" and then just be dismissed..... Thank you!

Just wanted to share our experience because some is similar to yours.

Last year my son (6) with almost zero symptoms was tested for celiac disease. His blood tests came back weird. All IgA tests were perfectly normal (including total IgA), his Gliadin IgG and TTG IgG were both elevated. MD sent him to Pediatric GI for further testing. Since it looked like he may have celiac disease, I started learning about it and realized I had had many, many of the symptoms for the past 5 or 6 years - ever since I was pregnant with him! (pregnancy can be a trigger). I got tested too and my IgA levels were all very high.

Son's GI did genetic test and DGP tests . . .genetic test show LOW probability and agin, the IgA tests were fine, IgG were up. He concluded that son did NOT have celiac disease. (he told me I had read too many magazine articles . . .)

I went to adult GI and was told that based on my symptoms and blood tests that I DID have celiac disease. A biopsy was scheduled, not to confirm the diagnosis, but to have a starting point to monitor my healing.

At this time it just seemed weird that I would have it, but my son - who was tested first, didn't. So I took him to a Celiac Specialist and she was concerned about the IgG levels. She did a biopsy and found him to have extensive damage.

I had my biopsy and had NO DAMAGE AT ALL. My doctor then reversed his thinking and said I was fine. Probably IBS . . . maybe the original blood tests were wrong, etc. etc.

So now it is even weirder that I have the symptoms, I have a son with it, and I just have IBS? Really?

Anyway, we both went gluten-free and all my symptoms are GONE. Son doing great too. At follow up visit with my doctor, he "officially" diagnosed me with gluten intolerance. Whatever.

My son's doctor (celiac disease specialist) said that is a lot of hooey. Blood tests aren't elevated for no reason at all. She said I obviously have it and maybe just not long enough for damage to show. The biopsy can be wrong, especially if they don't do 7-10 samples.

So, I would think you have it - or at the very least, are gluten intolerant - based on your IgG test results. Go gluten free, be strict, and see if you don't feel better in a few weeks. Don't forget that you may feel worse at first (I did, son did not) but keep going. Give it a good 3 months and don't cheat. You will be very pleased with the changes you see.

Hope you are feeling better soon.

Cara

mommida Enthusiast
mommida
Posted

Just a headsup the "go rounds" just continue.

Like I said my daughter was diagnosed as "probable" Celiac at 17 months old. Elevated levels on the Celiac panel, positve for DQ2 and DQ8 celiac genes and was deemed to ill for the endoscopy. (as she was hospitalized for dehydration for 3days.)

When she was getting diagnosed with Eosinophilic Esophagitus (6 years old on a gluten free diet since she was 17 months old) no Celiac damage on the scope. Put on an elimination diet avoiding all top 8 allergens, glute free, and avoiding peas, food dyes, and perservitives. No Eosinophils, no celiac damage on the scope report. It was a very encouraging report, her EE could be controlled by avoiding food triggers!

Flash forward to present day events. She was having pain and coughing up food that had been stuck in her throat. In for another endoscopy. High levels off Eosinophils, damage to her stomach, but no cleiac damage. Well frickin DUH the child has not eaten gluten since she was 17 months old and is now 9 years old. The ped GI has taken away her "probable" Celiac diagnoses!!!??? (and diagnosed her as a NEW Eosinophilic Esophagitus case. (Apparently when she had the "clean scope" on the severe elimination diet he UN diagnosed the EE.)

He told me to feed her gluten!!!? I told him she would end up in the hospital AGAIN if Idid that and he is CRAZY!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Just a headsup the "go rounds" just continue.

Like I said my daughter was diagnosed as "probable" Celiac at 17 months old. Elevated levels on the Celiac panel, positve for DQ2 and DQ8 celiac genes and was deemed to ill for the endoscopy. (as she was hospitalized for dehydration for 3days.)

When she was getting diagnosed with Eosinophilic Esophagitus (6 years old on a gluten free diet since she was 17 months old) no Celiac damage on the scope. Put on an elimination diet avoiding all top 8 allergens, glute free, and avoiding peas, food dyes, and perservitives. No Eosinophils, no celiac damage on the scope report. It was a very encouraging report, her EE could be controlled by avoiding food triggers!

Flash forward to present day events. She was having pain and coughing up food that had been stuck in her throat. In for another endoscopy. High levels off Eosinophils, damage to her stomach, but no cleiac damage. Well frickin DUH the child has not eaten gluten since she was 17 months old and is now 9 years old. The ped GI has taken away her "probable" Celiac diagnoses!!!??? (and diagnosed her as a NEW Eosinophilic Esophagitus case. (Apparently when she had the "clean scope" on the severe elimination diet he UN diagnosed the EE.)

He told me to feed her gluten!!!? I told him she would end up in the hospital AGAIN if Idid that and he is CRAZY!

How frustrating! :o I hope you can figure out what's triggering her symptoms. It seems like the Dr.s are NO help!

Takala Enthusiast
Takala
Posted

Is this guy trying make sick patients, or cure them ? :huh:<_<:blink::ph34r:

mushroom Proficient
mushroom
Posted

Patients?? They don't care about the health of their patients. They are in love with their damned tests!!!

MomGoneRunning Rookie
MomGoneRunning
Posted
  • Author

I have to agree with you Mushroom. I feel like my GI does not give a rats behind about my health. He told me to "Its probably IBS and to follow up with my primary"..... Uhhm, but I'm still having the same problems as before and she referred me to you because of them........ And I'll bet you'll charge me a boat load of $$ for telling me nothing. Oi'.

Patients?? They don't care about the health of their patients. They are in love with their damned tests!!!

mommida Enthusiast
mommida
Posted

I just hope this doctor isn't running around trying to say he "cured" her Celiac or Eosinophilic Esophagitus.

She really wanted to try eggs to see if she could have them. Well she can't and the damage caused food to get trapped in her throat. I am pretty sure we know what her "triggers" are. Just managing accidental exposure activates eosinophils for 12 days of havok, to weeks of healing. She was hacking up *TMI alert* bits that looked like soggy corn flakes. :unsure: The scope was done to see how much damage occured and if any further medical intervention needed to be done.

Carolmom3 Newbie
Carolmom3
Posted

Ok... you guys are scaring me with all the negative doc stuff. I saw a difference in just a week and a half after taking my son off gluten. I hated putting him back on it just for the testing but I did and WHOAAAAAAAAA... IT's bad.

I'm praying that the doc that we have is really thinking of my son and what he is going through. I don't know anything about these docs.

I am going to ask my middle son's doc, GI specialist, to do a celiac test because he has been sick since he was 2 weeks old. They have classified with as Reflux. It very well could be what it is but I think since he is seeing him in a week and it's taken us 5 months to get into him, I'll ask for the test.

Carol

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.