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How Long Did It Take For You To Notice A Difference?


AJSmom

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AJSmom Rookie

My son is 3.5. I'm curious to find out how long it took you to notice a difference.

My son also has a speech delay so he can't communicate is needs very well. He will cry when in pain but not really be able to tell me what is wrong.

I have notice a slight change in his bowel movements..to a more "normal" colour, not a huge change just slightly. Just wanting to make sure it's not just me wanting a change to happen right away...??

So, in your experience how soon did you see changes?

Tracy

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Sandi Explorer

I noticed changes right away and 8 weeks of being careful still seeing some changes.

I do know when I by accident ingest gluten, It is much worse then when I was eating regularly.

Is your son in early intervention? They are a blessing.

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AJSmom Rookie
I noticed changes right away and 8 weeks of being careful still seeing some changes.

I do know when I by accident ingest gluten, It is much worse then when I was eating regularly.

Is your son in early intervention? They are a blessing.

We have infant development..I think that's what you are referring to. Yes! he's had that since 12 months old. He also has speech, physio therapist and OT.

I'm seeing so many changes in him. He's SLEEPING!!! that's a big one...he's sleeping in!! Huge changes with his diapers..he has been on medication since he was 6 months. He never had lose stools, he's always had the constipation. I've decreased his does today and that is our goal to get him completly off this medication. But his stomach was always distended, I think it'll be awhile till we notice that change. I can tell he's feeling better....it has been hard these few days.

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lizbeth93099 Rookie

My daughter has been gluten free about a month now. The first week was rough I would say. The second week I would say I started noticing changes. The third week I think she got gluten somewhere and her symptoms were bad...but over all I do see a difference in her. She's 9 and has even made comments that she has noticed changes too.

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elle's mom Contributor
My son is 3.5. I'm curious to find out how long it took you to notice a difference.

My son also has a speech delay so he can't communicate is needs very well. He will cry when in pain but not really be able to tell me what is wrong.

I have notice a slight change in his bowel movements..to a more "normal" colour, not a huge change just slightly. Just wanting to make sure it's not just me wanting a change to happen right away...??

So, in your experience how soon did you see changes?

Tracy

My dd was 2 1/2 when she started the diet and I remember at 2 weeks we were astounded. The main difference was in her mood, she was just much happier and more playful. She also never had diarrhea, but rather suffered with constipation. It has been almost 2 years and we've recently taken her off her fiber supplement so that was a slow-go, but it's a journey.

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AJSmom Rookie
My dd was 2 1/2 when she started the diet and I remember at 2 weeks we were astounded. The main difference was in her mood, she was just much happier and more playful. She also never had diarrhea, but rather suffered with constipation. It has been almost 2 years and we've recently taken her off her fiber supplement so that was a slow-go, but it's a journey.

I'm very interested to hear this, because the med student that was with the ped the first time gluten-free diet and celiac disease came up she said he has to have diarrhea as an indicator!! I'm finding that's not always the case.

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elle's mom Contributor
I'm very interested to hear this, because the med student that was with the ped the first time gluten-free diet and celiac disease came up she said he has to have diarrhea as an indicator!! I'm finding that's not always the case.

No, it's definately not. Apparently that med student needs to study a little more!

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Mama Ruthies Rookie

Hi Tracy,

Our son (a little over 5 and gluten free for almost 2 years) also has speech delays which we now know were caused by gluten. We noticed that first month or so was hard (our allergist also had him off milk, egg, yeast and soy) and our son had loved bread, bagels, yogurt, etc. ---all stuff he all of a sudden couldn't have.

His speech really started to improve around 6 months gluten free. At about 7 months gluten free, he got a piece of gluten pizza and his speech regressed for 8 weeks. We've found out that if he gets some gluten, it takes about 8 weeks and then the speech still isn't as clear as before.

I would suggest having your son's iron level checked. We found out last year our son was anemic.

A great resource for language delays is a book called Play to Talk by Dr. James D. MacDonald. Dr. Jim has many great ways to change how we interact with our kiddos (take turns, "play with words----imagine them being a ping pong ball", matching our kids, reducing questions). We have had such a change since using Dr. Jim's ideas---he really empowers parents. We had our son evaluated by Dr. Jim, and he has such a huge heart for these kids. We also saw another leader in the country for late talking kids who within 20 minutes said that our son presents just as kids with celiac. He said that some day down the road our son will tell us that there was a time when he really hurt. Broke our hearts, but we know it's true. Our son has also struggle with allergies and sleep apnea (we had his adeonoids out in the spring and it made a world of difference).

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
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    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
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    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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