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herestohealing Newbie
herestohealing
Posted

I have been dealing with constipation/diarrhea along with stomach pains, fatigue, poor sleep, anxiety, bloating, gas, stomach cramps, heartburn, and acid reflux for the past several years. Doctors have been no help. Every time they would recommend tests they would come back normal and that would be it! They would tell me to give it more time! About 6 months ago I had a scan done of my abdomen and they found swollen mesenteric lymph nodes. Again, I was told this would go away on its own in a couple weeks.

I started doing some of my own research and found that Celiac's Disease fit all of my symptoms. My grandma had Celiac's and my mother was told she has IBS. So, though unadvised by many sources, I started a gluten free diet without a proper diagnosis.

I went gluten-free on May 3rd. Within 24 hours my gas, cramps, and bloating were gone. The 4th night I began sleeping better. I slept all through the night and felt great in the morning. I had solid, non constipated bowel movements!

I still have fatigue, though not to the same degree. I still have an ache that comes and goes from the lymph nodes area. I found on a Celiac forum a woman that had a similar issue where it took 7 months for her lymph nodes to return to normal size.

I started having headaches on day 5 that come and go (I have one right now). I was wondering if anyone else had headaches when going gluten-free and if anyone else had Mesenteric Lymphadenitis as a result of Celiac's?

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mushroom Proficient
mushroom
Posted

Hello, and welcome to the board. I am so glad you are feeling better without the gluten. It is amazing what a difference it can make.

I am afraid I am not famliar with mesenteric lymphadenitis so cannot comment, but as for the headaches, they are generally a sign of gluten withdrawal (yes, it does exist) and should go away in a couple of weeks. and your fatigue should gradually recede (it can take longer). I hope you continue to improve, and that your lymph nodes eventually return to normal. If not, you should follow up again with your doctor. :)

GFREEGURL Newbie
GFREEGURL
Posted

hi I am new to celiac's disease and have been diagnosed since the 26th of April. For a year I had similar symptoms as you do and I thought this is not normal and something is not right. I made a appointment with a gastroenterologist and he said well you have a 5% chance of having celiac disease and gave me samples for the probiotic align. I had severe stomachaches and stabbing pain in the right lower abdomen that I thought it was my gallbladder. Sure enough all my blood tests, biopsies, x-rays all came back normal or the x-ray showed gas. I didn't believe a word of it so I went for a second opinion. Thankfully I found Dr. Rai of the Gastro center of Maryland and he confirmed that did indeed have celiac's disease. I thought THANK GOD!!!!!!!!! Finally an answer and now how to live with it. I so relieved that I found an answer and I'm not in pain when I eat,but am still getting headaches and definitely still hungry most of the time. Does anybody still have to force themselves to eat? Most of the time I find I don't want to eat or I look around to find how do I make anything using the gluten-free products I just bought. Mostly I have been eating gluten-free chex cereal, applegate gluten-free roast beef and cheese, fruits, veggies and still don't feel full. I also wonder if anybody has struggles with depression or weight gain before making the discovery of celiac's disease? Thanks for reading and good luck everybody on this journey.

Jessica

celigurl Newbie
celigurl
Posted

I just got tested positive for celiac. I have a slightly swollen neck, like under my chin on each side. Would that be my lymph nodes? It's good to hear they get smaller just by going gluten-free.....

Thank you!

herestohealing Newbie
herestohealing
Posted
  • Author

Last night I began to get a sore throat so I don't know if the headaches were gluten withdrawals or just a symptom of the cold. The first couple of days on the diet going out to eat and looking through the cupboards was very depressing. However, I found it helpful to find things that I would have enjoyed before that are naturally gluten free like; meat, fruits, veggies, corn flakes, corn chips, rice, and cheese on everything. I'm probably going to gain some weight but I can always worry about that later, right? ;)

Some folks report a lactose intolerance, which fortunately I have not had but I have noticed that eggs and potatoes make a quick exit.

sa1937 Community Regular
sa1937
Posted

Last night I began to get a sore throat so I don't know if the headaches were gluten withdrawals or just a symptom of the cold. The first couple of days on the diet going out to eat and looking through the cupboards was very depressing. However, I found it helpful to find things that I would have enjoyed before that are naturally gluten free like; meat, fruits, veggies, corn flakes, corn chips, rice, and cheese on everything. I'm probably going to gain some weight but I can always worry about that later, right? ;)

Some folks report a lactose intolerance, which fortunately I have not had but I have noticed that eggs and potatoes make a quick exit.

Welcome! Once you get used to it, you'll find a lot of things to eat and the diet will get much easier. I did have to give up most dairy products right away but found I could use Lactaid milk without a problem. I've just recently started eating more cheese and how I missed it!

Check the label on your box of corn flakes. Most of them contain malt, which is usually made from barley and thus is not gluten-free.

herestohealing Newbie
herestohealing
Posted
  • Author
Check the label on your box of corn flakes. Most of them contain malt, which is usually made from barley and thus is not gluten-free.

Thanks for the cornflake tip! I've only had one bowl and it was this morning. I just bought a huge box of the stuff. Man this is frustrating!

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sa1937 Community Regular
sa1937
Posted

Thanks for the cornflake tip! I've only had one bowl and it was this morning. I just bought a huge box of the stuff. Man this is frustrating!

It will get easier!!! You might want to get some Chex cereals (obviously not Wheat Chex) as there are several that are gluten-free and boxes are well marked.

  • 1 year later...
janiepoo7 Newbie
janiepoo7
Posted

I am self diagnosed also and though I would really like to get a real diagnosis, I am not sure I want to go back to eating gluten just yet. I have only been off for a few weeks and immediately felt better, but then ran into dry roasted peanuts which was an issue. When I figured that out I felt better but in the last few days have been getting headaches. Is that normal at this point? One of my most severe symptoms which I think is from gluten is swelling in my legs with achiness. Does anyone else have something like that? Sometimes I wonder if I am making it all up in my head. That is why a real diagnosis would be beneficial. Isn't there a book with every brand of everything that I could carry around? How long do you have to be off gluten before you feel 100% again? And if you had major constipation and/or diarrhea, swelling in legs and often other extremities, moodiness, thyroid issues, anemia, bloating, allergies, etc. would that be enough to just stay off gluten? Help!

dani nero Community Regular
dani nero
Posted

Welcome herestohealing and congratulation on figuring out what was slowing you down :-) As the others said you'll be slow for a while longer but you'll find that in a few months you'll start feeling like a new person. Hang in there!

1desperateladysaved Proficient
1desperateladysaved
Posted
And if you had major constipation and/or diarrhea, swelling in legs and often other extremities, moodiness, thyroid issues, anemia, bloating, allergies, etc. would that be enough to just stay off gluten? Help!

First, a question, For how long have you been ailing? That might help someone to know how long before you start feeling better. I hate to tell you, but you could feel somewhat worse before you feel better. Hang on and ride it, it will get better.

I figured out at the shoe store that my feet swell up and down. I can see swelling in my legs. I am not definatly sure it is gluten. I don't have another explanation. I do have anemia.

I take ferriton for my anemia. Make sure it is not wheat. Many of us have allergies too. It is a good idea to take gluten free supplements to help your body recover.

Best wishes and get well soon.

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