Having a flake out

[kam00096]

I'm two weeks in to a four week wait for biopsy results and I'm panicking. I've been gluten free for almost a year after 2 positive blood tests for celiac, and refused to do a gluten challenge, as I can't get any more sick again. The docs decided to do the endoscopy and biopsy anyways as I was still having issues.

Basically I'm really concerned about intestinal lymphoma. I've been worried about lymphoma in general for months as have multiple (small) swollen lymph nodes in both sides of my neck and just found more in my groin. Blood tests are normal and I had an ultrasound of the neck ones which showed they were normal but reactive. They thought at that point it was due to an issue with my scalp/ skin (but that doesn't explain the groin ones now). I'm also having almost all of the b symptoms of lymphoma... fatigue, night sweats every night, nighttime itching without a rash, persistent cough, and have recently started with a pain in my lower back and stomach at night. And I'm still having bowel issues on a daily basis despite being strictly gluten free.

I'm terrified to be honest. No one's mentioned intestinal lymphoma... I didn't even know it was a thing until I found it on here. My doctor thinks I'm a hypochondriac lunatic and wants to put me on anxiety/ depression meds but I've had them before since these symptoms started and they didn't help so I don't believe it is anxiety (although obviously I'm anxious now!). 

I was so relieved when I found out I might have celiac as I though it was the answer to the health problems that have plagued me for years but going gluten free really hasn't made any difference. I feel like I've been ill my entire adult life and if it is lymphoma I'm screwed as have had the night sweats and stuff for at least 3 years. 

I have no one I can talk to about any of this and I'm actually at the stage where I'm scared to go to sleep at night because I feel worse in bed and when I wake up in the morning. The only non-terrifying explanations I can come up with are other food allergies or a hormonal issue (which I had bloods taken for yesterday). But honestly I'm pretty convinced it's lymphoma. 

[Ennis-TX]

Makes you feel better, I have the same issues with the nodes on my neck randomly swelling, and constant night sweats, like sometimes bed soaked. Several other random symptoms like bloody stool etc come and go (thought it was lymphoma myself). I got a endoscope earlier in the month and the only thing they found was polyps, which tested negative for cancer or bacteria, and a bunch of inflammation. Best news was after 3+ years of gluten-free diet they said the small intestines are healing, They have me doing a lower scope next month to make sure they did not miss anything. Found my energy level is good now days with supplements of B-vitamins, Iron, Magnesium, and a few others. Might suggest my regime for the fatigue seems to work wonders for me. Talk to a dietician or doctor and see about your levels of vitamins, minerals, and iron. Other thoughts are it could be allergy to something your eating, could even be something small and odd. Or it could be a reaction to mold, or pollen that is present daily, or even your laundry detergent.

[GFinDC]

Hi Kam,

This article might be interesting for you.  Kinda medical jargon, but it talks about benign causes of lymph node swelling, which is the most common situation it says.

Open Original Shared Link

I had night sweats for years myself.  There is a thread about night sweats on the forum.  If you try the search forum via Google option at the top left of the thread title, for night sweats it will find some hits for you.

I had a swollen lymph node in my neck for many years, and it didn't cause any problem.

[kam00096]

Thank you for these replies. Am hoping it may just be hormonal although that seems unlikely really. I'm so fed up of all this. I have elderly parents who are both unwell and a high stress job, and Im not sure how much longer I can deal with waking up feeling so ill for. 

[Jmg]

9 minutes ago, kam00096 said:

I'm so fed up of all this.

I know how you feel. I had a 'moment' in the supermarket tonight. I'm fed up of reading labels or reaching for something then putting it back. I feel like a different species sometimes, living amongst them but not of them

Again, if its any comfort I had swollen lymph nodes for years, under arms or neck usually. I sweated like a pig, used to ruin shirts because I used loads of anti perspirant and could wake up wet from night sweats.  All of which has mostly cleared up under the diet, which makes me wonder if you're maybe getting any kind of cross contamination or other reaction? 

20 hours ago, kam00096 said:

I have no one I can talk to about any of this

Well, you do have us!  Keep on keepin on Kam

 

[kam00096]

1 hour ago, Jmg said:

I know how you feel. I had a 'moment' in the supermarket tonight. I'm fed up of reading labels or reaching for something then putting it back. I feel like a different species sometimes, living amongst them but not of them

Again, if its any comfort I had swollen lymph nodes for years, under arms or neck usually. I sweated like a pig, used to ruin shirts because I used loads of anti perspirant and could wake up wet from night sweats.  All of which has mostly cleared up under the diet, which makes me wonder if you're maybe getting any kind of cross contamination or other reaction? 

Well, you do have us!  Keep on keepin on Kam

 

Thank you so much for this! Honestly it really does help having somewhere to offload where people 'get it'! I'm sorry you had a supermarket moment... I've had plenty of those but I would handle it better if I felt all the effort and label checking was helping. I have wondered about cross contamination or other intolerances but I guess I've been putting off restricting my diet any more until I get the biopsy results back. I do know I need to cut down on gluten-free alternative products and seriously overhaul my diet but I'm a bit disillusioned with that too as I've tried it a few times over the last year and still haven't felt great. It's interesting (and kinda reassuring) to hear that other folks have had issues with night sweats and swollen lymph nodes too! 

[squirmingitch]

I had night sweats, day sweats/hot flashes and swollen lymph nodes in neck and in groin both before gluten free and lasting, I'm guessing, at least a year into gluten free. I've been gluten free for over 5 years now & didn't keep a log of how long it took lymph nodes to go away after gluten free so I can't give you an exact time frame.

I hate to say this but it's possible you're one of the ones (like me) who is super sensitive and will need to go with something like the Fasano Gluten Contamination Elimination Diet. I'm doing so much better after being on it for 3 months.

[kam00096]

7 hours ago, squirmingitch said:

I had night sweats, day sweats/hot flashes and swollen lymph nodes in neck and in groin both before gluten free and lasting, I'm guessing, at least a year into gluten free. I've been gluten free for over 5 years now & didn't keep a log of how long it took lymph nodes to go away after gluten free so I can't give you an exact time frame.

I hate to say this but it's possible you're one of the ones (like me) who is super sensitive and will need to go with something like the Fasano Gluten Contamination Elimination Diet. I'm doing so much better after being on it for 3 months.

I haven't heard of that diet... I'll definitely do some research! I am wondering if I'm one of those folks who reacts to gluten-free oats as I've still been eating oatcakes pretty regularly (ironically for ongoing nausea!). Swapping to rice cakes from today! 

[squirmingitch]

I have a problem with even purity protocol grown gluten-free oats. Yes, see what cutting oats does for you.....maybe that's all you'll need to do.

Just FYI, here is the Fasano diet:

Open Original Shared Link

 

[kam00096]

10 hours ago, squirmingitch said:

I have a problem with even purity protocol grown gluten-free oats. Yes, see what cutting oats does for you.....maybe that's all you'll need to do.

Just FYI, here is the Fasano diet:

Open Original Shared Link

 

Thank you! I'll definitely check it out. Sweat dripping and shattered after a bit of hoovering this morning. Just want to go back to feeling like a normal 30 year old instead of about 100! 

[Jmg]

On 1/27/2017 at 10:37 PM, kam00096 said:

. I do know I need to cut down on gluten-free alternative products and seriously overhaul my diet

Yeah me too, I'm doing better than you but am getting some signs of cross contamination or some other slippage of the diet and have been given the same excellent advice that makes a lot of sense but, meh I don't want to!   

*Stamps feet, throws toys out of pram

Hope you get some relief soon.

 

[kam00096]

On 29/01/2017 at 1:25 AM, squirmingitch said:

I have a problem with even purity protocol grown gluten-free oats. Yes, see what cutting oats does for you.....maybe that's all you'll need to do.

Just FYI, here is the Fasano diet:

Open Original Shared Link

 

Thank you! I'll definitely check it out. Sweat dripping and shattered after a bit of hoovering this morning. Just want to go back to feeling like a normal 30 year old instead of about 100! 

[kam00096]

So I just had my worst night of night sweats yet. Up 4 times and had to change pyjamas. Also I got really dizzy and disassociated whilst driving last night which I haven't had dice going gluten-free. Doctors for me today. I'm completely exhausted and about to run into problems with work because of my attendance but I just can't do it. 

[ravenwoodglass]

2 hours ago, kam00096 said:

So I just had my worst night of night sweats yet. Up 4 times and had to change pyjamas. Also I got really dizzy and disassociated whilst driving last night which I haven't had dice going gluten-free. Doctors for me today. I'm completely exhausted and about to run into problems with work because of my attendance but I just can't do it. 

So sorry you are going through this. I also had lots of swollen lymph nodes and they do take a very long time to go down. The night sweats are awful. I dealt with them for too long myself. Thought I would chime in on what gave me a bit of relief. I kept a fan next to the bed that had a remote. When that awful heat would awaken me I would throw off the covers and turn it on full blast setting the remote timer for 1/2 hour. It didn't stop them but it at least let me get back to sleep. I also used flannel sheets over a water proff mattress pad. That way at least if the bedding got damp it wasn't clammy. Don't know if that will be helpful for you but hope it will. Make sure you are drinking plenty of water to replace what you are losing at night. Dehydration can make us a bit dizzy although that may not be what caused you problem last night extra fluids won't hurt.

Do take the advice to drop the gluten-free oats. Wait until you are well healed before you add them back in.

I hope you get the results of your tests soon and your mind is set at ease about the possibility of lymphoma. 

[kam00096]

Thank you! The trouble is when I actually wake up I'm frozen! I'm already sleeping with the window open and in a tshirt but I'll definitely have a think about bedding. And I do need to watch the dehydration thing... I'm bad for not drinking enough water. Although ironically yesterday I drank two litres and felt the worst I've been lol.

Just out of the doctors... they were awful. Told her what I was worried about and she said 'you're doing it to yourself' (I've had one appointment with this women before today so she's seen me for a grand total of about 7 minutes!). I lost it a bit and said how was I possibly giving my self swollen lymph nodes? And she said everybody gets them and did I want to feel hers?!? I declined! She says I have thickening in my groin but it's the same both sides and nothing she would be concerned about. Sent me for a chest X-ray which is something at least so I've to wait for those results and my hormone tests.

My endoscopy/ biopsy results were back and were completely normal, which is actually a bit disappointing. Firstly it means still no celiac diagnosis (which I knew was most likely as an gluten free, but thought there might have been some damage still left there). Secondly means current issues aren't celiac/ diet/ CC related which would have been easier to fix. She's not willing to rerun the celiac blood panel or check my vitamin D again as doesn't think it's connected. Am so frustrated!  

[Ennis-TX]

At this point I am starting to suspect a allergic reaction to something. Slightly swollen lymph nodes, night sweats, your body is reacting to something. Is there a fever or a lower temperature fluctuation that happens when your feeling bad? Try keeping a body temperature log, even checking it during the night. See how this relates to your food log, and sleep patterns. Might find a pattern, might not but at least this would give a bit more clarity on how your body is reacting.

How is your food journal and diet? Have you tried stripping your diet down to nothing but plain foods then rotated them? It might be something retarded in your diet, like corn, meats, or even a odd ball like nightshades, legumes, or even bloody fructose. Might be a bit harsh but try like one day of just one food for the entire day, also check your meds/supplements/shampoos. Perhaps some ingredients changed in something that used to be a daily part of you life. Hope some of these perspectives might help.

[kam00096]

7 hours ago, Ennis_TX said:

At this point I am starting to suspect a allergic reaction to something. Slightly swollen lymph nodes, night sweats, your body is reacting to something. Is there a fever or a lower temperature fluctuation that happens when your feeling bad? Try keeping a body temperature log, even checking it during the night. See how this relates to your food log, and sleep patterns. Might find a pattern, might not but at least this would give a bit more clarity on how your body is reacting.

How is your food journal and diet? Have you tried stripping your diet down to nothing but plain foods then rotated them? It might be something retarded in your diet, like corn, meats, or even a odd ball like nightshades, legumes, or even bloody fructose. Might be a bit harsh but try like one day of just one food for the entire day, also check your meds/supplements/shampoos. Perhaps some ingredients changed in something that used to be a daily part of you life. Hope some of these perspectives might help.

The different advice I've had on here has been brilliant! I'm going to strip my diet right back and keep it that way for a while (I've tried it before but never really stuck with it). I'm definitely noticing my temp is funny during the day too (another reason I've been panicking about lymphoma!) but maybe it is still a reaction to something I'm eating. I was also thinking tonight that although my biopsy was clear for celiac damage they might have missed it so I guess it could still be that.