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How Long Will It Take For My Symptoms To Go Away?
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I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.

It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?

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Your symptoms sound very severe, i was diagnosed at 13, during this time till my early 20's i found it impossible to gain weight. Later finding out that i was very intolerant to dairy, mainly milk and cheese. Once i had figured that i was feeling much better but the weight gain didnt come till i hit about 22-23.

I think you really need to get yourself checked out again, maybe by another doctor. Also, go see a dietitian as they can help a lot!

Best of luck!

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Hey laughingchicklol,

My heart just went out to you when I read this post, that is an awful experience!

I have known that I was celiac since I was 12. I was never an unhealth kid, but I had stomach problems and skin rashes mostly. When I went gluten-free, hardly anyone knew what gluten was, let alone what it was in! So, I got a ton of cross-contamination, and was still sick for at least 2 years.

Now, most of my family has dicovered that they are celiac, and my mom runs a gluten-free bakery. She has had to learn a lot about celiac disease and because of my own interest in it, I have done quite a bit of research as well. What I have learned is that it takes a while for your gut to heal, before it can start digesting again. It sounds like you were effected pretty badly, so it might take you gut longer to heal. I'm not a doctor, I am only 17, but I hope that you know that things will get better. I have met hundreds of celiacs now, and not one that I have talked to has said that they feel worse when eating gluten free. Some have said that they dont feel any better, or they dont notice a difference, and almost everyone says they feel great...but it always takes time.

I really hope that you start to feel better, and I wish I could be of more help. Seeing another doctor would be a very good start, ask if they have any more suggestions or tips or new research to help you out. I always suggest to other celiacs to do as much research as you possibly can, the more educated you are, the more you can help others.

Good luck!

Eilidh

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I have been gluten free for six months, I started when I learned I had it. I went to the doctors originally because of extreme weight lose and a lot of other stomach problems. I started being gluten free from day one, but I continued losing weight, I have been admitted to the hospital twice because my weight was too low and finally I had a feeding tube put in to help get the massive calories it takes to gain weight. I have had it for four months now and have gained ten pounds. It almost seems impossible to gain weight. I know it is not because of frequent bowel movements because I have very bad chronic constipation, I have to do a home enema every other day just to go. Why haven't I gotten better? My stomach problems got so bad I can't eat food orally so I am completely dependent on the tube feeding, so I know I have been gluten free for four months but it seems like my absorption hasn't gotten better. It takes 3000 calories for me to maintain my weight of 100 pounds.

It took forever to get diagnosed. I have had the celiac blood test several times but they all came back negative, I didn't get diagnosed until I had a biopsy done. Could I have a misdiagnoses.Is it normal to take this long to get better?

I am so sorry about your condition-no, it normally does not seem to take so long to get used to the gluten-free diet. i am not sure about the weight loss-when i was younger i was diagnosed with type one diabetes. My symptoms, and common ones are weight loss, frequent urination, being super hungry and thirsty, and a lot of being sort of down, maybe dizzy. When you have type one diabetes, a common follow up disease is Celiac disease. that is in my case. All i can say farther is that maybe you have sum other allerigies like tree nuts or lactose. if u r getting fed threw a tube, idk wut to say about alleregies. Sry, hope this gets better.

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have you considered anything else, such as crohns disease? I remember someone telling me they hay had crohn's and had to eat over 4000 calories to gain weight due to malabsorption.

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There is a condition called refractory celiac, where they immune system doesn't seem to know how to back off when the gluten is removed. You could have that I suppose, but it is supposed to be very rare. Have the put you on any immuno-suppressants? That might help if you are still producing antibodies. I am not a doctor either but my brother had both Crohn's and celiac. Some people on the board had both celiac and microscopic colitis. It is not impossible to have 2 conditions at the same time. Has your doctor done a follow up endoscpoy yet? It seems like they would want to check the condition of your gut to see if there has been some healing since going on the diet.

I hope things get better for you soon and you get some answers. :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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