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How Do You Know If A gluten-free Diet Is Working?
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I was diagnosed with gluten sensitivity in Nov. and have been gluten-free since then (blood negative, then went gluten free for 2 months then decided to try a biopsy so did a 3 month gluten challenge then had a biopsy that was negative). My husband and I want to have another child at some point- within the next couple of years. Well, in calculating I figured that we could have a Christmas baby! With our jobs that would be amazing timing if it would work out. But I'm also considering this gluten-free diet....due to some issues with my first doctor I'm not totally sure i trust his diagnosis but am determined to give it a try since nobody else has come up with anything that worked. I switched to a different doc that seems pretty good- she is ok with calling me gluten sensitive but didn't think it can account for muscle pain/weakness I experience. So my plan was to strictly stick with the diet for about a year and then try reintroducing gluten to see if I notice anything. But if I were to become pregnant I don't know if reintroducing gluten into my diet while pregnant/nursing would be smart. I have a 2 year old that is gluten-free now and will be undergoing a gluten challenge this summer. Here's some things I have noticed since being gluten-free: acne cleared up, gums don't feel as swollen and don't hurt as much to floss anymore, possibly less headaches, stools firmed up (never had diarrhea but there's a difference now- almost constipated though so maybe not enough fiber?). My muscle pain/weakness has maybe improved some but those symptoms tend to come and go anyway and I have had one awful flare-up but it wasn't as long as I was expecting it to be. I do still have the annoying burning nerve pain in my armpits though. I am a musician though so it's not out of the question to blame the pain on an overuse injury as a result of the countless hours of practice. One other weird thing...during my pregnancy I began getting these random episodes of sudden coughing and having difficulty breathing. I don't know what caused them, but I don't believe I've had an episode while gluten-free. So I'm trying to figure out if the gluten-free diet is helping....do the things I have noticed seem like they could have been caused by gluten? The diet isn't so bad, but when I have 2 different doctors telling me different things it's hard to know what to do. Sticking with the diet through a pregnancy and then 6-12 months of nursing is a big committment, especially if one isn't 100% convinced it's needed. Any thoughts?

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Honestly, the symptoms of gluten intolerance/celiac disease are so wide and varied, all of the things you describe could VERY EASILY be attributed to gluten ingestion. I had some of the strangest things go away that I never in a million years would have associated with gluten until I saw in hindsight that they were gone (or at least greatly reduced) after going gluten free. Some that I can think of off the top of my head is that suddenly, immediately, after going gluten free, I stopped biting my fingernails. I had been a nail biter ALL OF MY LIFE, to the point that my fingers would be sore and bloody, but I still couldn't stop myself from biting them. Now, for the first time in my life, I actually have to cut my nails. I have not bitten them one single time since going gluten free. No other explination could be possible. I'd tried EVERYTHING in the book to get myself to stop and NOTHING AT ALL helped. Now I cannot even MAKE myself bite them even if I wanted to. I had thing strange, severe pain on the backside of my heel/ankle area on my right foot only. It was awful. Within a few months of going gluten free, I started noticing a difference with that and now after being gluten free for over six months, it is completely gone and has been for a while now. But that is also one of the things that does come back as soon as I get glutened (that and the big D). And another thing is these really bizzare 'hiccups' (that's what we always called them for lack of any better description) that I started having in elementary school. My sister used to call me flipper, some people would ask who just stepped on a mouse. But it would only be maybe as many as 3-5 (usually 1-2) and most often when my stomach was active (right after I ate or when I was pretty hungry). While I do still experience them from time to time, it is quite rare anymore.

IMHO, give the diet a go for a while longer and see if you have continued symptom improvement. It will be well worth it to your future new addition!

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Honestly, the symptoms of gluten intolerance/celiac disease are so wide and varied, all of the things you describe could VERY EASILY be attributed to gluten ingestion. I had some of the strangest things go away that I never in a million years would have associated with gluten until I saw in hindsight that they were gone (or at least greatly reduced) after going gluten free. Some that I can think of off the top of my head is that suddenly, immediately, after going gluten free, I stopped biting my fingernails. I had been a nail biter ALL OF MY LIFE, to the point that my fingers would be sore and bloody, but I still couldn't stop myself from biting them. Now, for the first time in my life, I actually have to cut my nails. I have not bitten them one single time since going gluten free. No other explination could be possible. I'd tried EVERYTHING in the book to get myself to stop and NOTHING AT ALL helped. Now I cannot even MAKE myself bite them even if I wanted to. I had thing strange, severe pain on the backside of my heel/ankle area on my right foot only. It was awful. Within a few months of going gluten free, I started noticing a difference with that and now after being gluten free for over six months, it is completely gone and has been for a while now. But that is also one of the things that does come back as soon as I get glutened (that and the big D). And another thing is these really bizzare 'hiccups' (that's what we always called them for lack of any better description) that I started having in elementary school. My sister used to call me flipper, some people would ask who just stepped on a mouse. But it would only be maybe as many as 3-5 (usually 1-2) and most often when my stomach was active (right after I ate or when I was pretty hungry). While I do still experience them from time to time, it is quite rare anymore.

IMHO, give the diet a go for a while longer and see if you have continued symptom improvement. It will be well worth it to your future new addition!

Thanks for the reply. I see how it can make sense to wait. I just get tired of not being "normal". I've been through so many tests over the last few years to figure out the pain. I think we've ruled about everything out, so it wouldn't surprise me if it's gluten and/or an overuse injury causing the problems. I always wanted to have my kids 3-4 years apart in age and just realized that we could hit that and a Christmas baby would be perfect timing since I'm a teacher. The end of the school year is so crazy for my teaching position that I would much rather have a Christmas baby if I have the option. The due date couldn't be more perfect and it's not like I can have the chance to have a Christmas due date every year, so I started getting excited about it and then I realized I needed to think about this gluten issue. I'm just sick of having to consider what my body is ready for or what it can handle with every life decision. Part of me feels so incredibly selfish for feeling frustrated with this when I see others around me dealing with far worse medical issues, but I just want to have a "normal" body.

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I'm just sick of having to consider what my body is ready for or what it can handle with every life decision. Part of me feels so incredibly selfish for feeling frustrated with this when I see others around me dealing with far worse medical issues, but I just want to have a "normal" body.

I understand completely and I think everyone goes through this to some degree or another in the beginning. It isn't easy at all, but I do agree that it's easier than what some have to deal with. My sister had Crohn's and I was tested for that prior and prayed to God that wasn't what I had. I think seeing what she's gone through and knowing that I could have been the same really helped me to see what a bullet I dodged. Hang in there! It does get easier with time... Hugs!

Jen

PS-Sorry if this is a bit rambling. Pregnancy brain kicking in this morning and I'm having trouble saying what I'm trying to say.

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I also have a 2 year old son that we're not sure if has celiac. He began reacting with horrible vomitting to certain foods around 6 months old and we think it was either gluten or soy. He had gluten a few months ago and there wasn't vomitting, so we're not sure what to think. We just kept him gluten-free because he was also dealing with c.diff. for awhile and didn't want to do a gluten challenge while he was dealing with that too. We will do a gluten challenge with him this summer. Genetic test for him showed 2 copies of DQ8- so the genes are there anyway. There are a couple cases of celiac in my husband's extended cousins. My acne has definately cleared up. I went gluten-free for a few weeks over the summer and thought the acne got better and then began a gluten challenge and the acne got bad again. After I went back to gluten-free I noticed it getting better again. My dermatologist gave me topical acne meds, but it had been clearing before I used them and even without using them regularly my face is so much better. One thing that became an issue while nursing my son was I built up a huge supply of frozen breastmilk and when we began wondering about food issues with my son we were becoming concerned if it was safe to feed my son the frozen milk. And since I had enough in the freezer to feed him for 2-3 months it was a big concern. So even if gluten isn't an issue for me, I wonder if I could have to eliminate it from my diet for future kids. We won't know if my son is celiac for possibly a year (we'll start the gluten challenge this summer and if there's not immediate reactions then the doctor wanted to blood test him in 6-12 months).

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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