My story & some help. Extreme hunger, bloating & fatigue

[Hrags]

Hello, gluten-free people!

If you ever had the chance to read, then Thank you for joining in, and thank you for being here.

I have had very unpleasant symptoms a few months ago, doctors think of a possible celiac case, but I am having weird symptoms even after gluten free and want to know if it's normal & if anyone else had something similar.

BEFORE: So all this started with a simple migraine, after work at night I would get very bad headaches and extreme fatigue. I thought it could be work... After 2-3 months I have realized I started to get very very hungry and lightheaded plus anxiety and depression. As if I had low blood sugar. I check my sugar levels and all in the normal range. Docs checked everything, all turned out ok. No diabetes, no hypoglycemia, no worms, no virus or bacteria, MRI tests ok, nothing. So I said ok then ill just eat more often. It passed 2-3 months and things went out of hands, so bad. I started repeatedly having extremely bad canker sores, LOST 10KG in like few months(while i eat more), extreme hunger, and then came in the nausea & vomiting and extreme constipation with huge stools for months and months. Every time I went to my aunt's place, I would get so sick, she always made me fresh breads to eat. I went to the emergency room maaaany times with no solution. They tell me im fine. So I had nausea, indigestion, constipation, canker sores, extreme hunger with hypo like symptoms, burping, extreme weight loss, sometimes vomiting, neurological symptoms like numbness on my lips and half body, and more. Man, I was going mad, something was not right, not right at all. I weighed 46kg on my worst days (extremely underweight). So once I saw this new doctor he told me this could be celiac. I have never heard of it before, so I did some research, and I was pretty convinced, although no confirmation yet. I did IGA antibody test but negative (Doc didn't tell me I had to be on a gluten diet (i was gluten-free for weeks already) and they didn't check my IGA levels, so stupid) So after going gluten-free and even started keto for my diet, things got better, suddenly my bad canker sores were gone, nausea gone, indigestion gone, ect. Waiting for endo & biopsy

NOW: I have been better, gained 4kg in 1 month, from 46 to 50kg but I have a few problems. I keep getting extreme hunger sometimes, rarely bloating and burping, I've been gluten-free & dairy-free for a month now, I've been contaminated many times though.

QUESTIONS:

1) is it normal to be extremely hungry before and especially after going gluten-free? i have to eat every 2h or i get lightheaded, some days worse or better than others does this go away? could it be because of malnutrition? 

second, why do I still have burning and bloating sometimes, even without a diary, could it be cross-contamination? 

and I think, after getting glutened, idk how but somehow, I get extreeeeeemeeee hunger, lightheaded, extreme fatigue & constipation. is that normal? my sugar levels are always normal when I get that feeling. 

Plus with all that, one side of my face goes a bit numb tingling and stiff sometimes. Can cross-contamination cause that too?

Waiting for DNA results might get next week and endoscopy but not sure when they will do. 

Thank you so much for your help, I have suffered so much and slowly finding some hope. 

[trents]

Three things:

1. If you have been eating gluten-free (or trying to) for awhile, the endoscopy and biopsy may be invalid or inconclusive just as with the blood tests.

2. Dude, you must get a handle on cross contamination. You need to be more diligent about this. You are shooting yourself in the foot if you are trying to eat gluten-free but not being scrupulous about avoiding cross contamination. What situations do you find yourself in that you are getting cross-contaminated? Every cross contamination event will typically take two or three weeks to recover from. It resets the healing clock. By your own admission, you have prevented progress by not paying necessary attention to cross contamination. You are practicing a lower gluten diet rather than a gluten free diet and that will just not work.

3. I wouldn't be surprised if you have other medical problems in addition to Celiac Disease. The range and severity of symptoms you describe seem beyond the normal scope of Celiac Disease. However, until you are truly eating gluten free, you won't be able to sort them out.

[Hrags]

21 minutes ago, trents said:

Three things:

1. If you have been eating gluten-free (or trying to) for awhile, the endoscopy and biopsy may be invalid or inconclusive just as with the blood tests.

2. Dude, you must get a handle on cross contamination. You need to be more diligent about this. You are shooting yourself in the foot if you are trying to eat gluten-free but not being scrupulous about avoiding cross contamination. What situations do you find yourself in that you are getting cross-contaminated? Every cross contamination event will typically take two or three weeks to recover from. It resets the healing clock. By your own admission, you have prevented progress by not paying necessary attention to cross contamination. You are practicing a lower gluten diet rather than a gluten free diet and that will just not work.

3. I wouldn't be surprised if you have other medical problems in addition to Celiac Disease. The range and severity of symptoms you describe seem beyond the normal scope of Celiac Disease. However, until you are truly eating gluten free, you won't be able to sort them out.

Thank you for your reply.

I have lots of gluten in my house, had to do a clean-up, i accidentally would get cross-contaminated as gluten hides in everything. I've been extremely strict now with cross contaminated like microwaves toaster and spunges to see if other symptoms disappear, this way i can make sure if its all gluten-related or there is something else, or it's something else. I have not eaten anything containing gluten for a month, only accidental contamination i think . I assume i got contaminated when i feel like there's a hole in my stomach i sometimes feel sick and get extreme hunger have to eat now (blood sugar would be ok) lightheadedness then bloating after eating fatigued, and end up sleeping. My left face would go stiff as well. I would get burping and bloating and then sudden hunger attacks the days ahead. Someone told me i could also have extreme allergic reactions on top of all the problems...

Does celiac usually with very very small accidental cross-contamination cause lots of trouble? 

I do have other conditions, i just got diagnosed weeks ago as lactose intolerant as suddenly i realized dairy products are causing some trouble. I also have reactive hypoglycemia non diabetic but usually get hypoglycemia when eating sugary stuff, otherwise, for example on keto, my sugar levels seem very stable.

Yes, not eating gluten can give negative results. Made sure to my doc to tell my endoscopy dates before when he has them so i can start eating gluten again for a few weeks.

Any other updates ill keep them posted here, thank you.

 

[trents]

For sure, even small traces of gluten from cross contamination can make some celiac suffers very ill. But not all are that sensitive. There is tremendous variation. Having said that, absence of symptoms is not necessarily a reliable indicator of no cross contamination or no stress to the gut villi.

[Hrags]

On 11/7/2020 at 12:48 AM, trents said:

For sure, even small traces of gluten from cross contamination can make some celiac suffers very ill. But not all are that sensitive. There is tremendous variation. Having said that, absence of symptoms is not necessarily a reliable indicator of no cross contamination or no stress to the gut villi.

Noted, I'll try to be extremely careful and see, meanwhile I get my DNA results before doing biopsy. 

I live with others who are not gluten free but I have made them know that I will be gluten free for now until I get official results. I have separated my stuff dishes plates brush towels etc. 

Now will wait and see if my crazy hunger and fatigue subsides slowly. In addition to my neurological symtoms and bloating. I'll keep them updated here.

I am open to any new suggestions  Thank you. 

[Hrags]

 

On 11/6/2020 at 6:25 PM, trents said:

Three things:

1. If you have been eating gluten-free (or trying to) for awhile, the endoscopy and biopsy may be invalid or inconclusive just as with the blood tests.

2. Dude, you must get a handle on cross contamination. You need to be more diligent about this. You are shooting yourself in the foot if you are trying to eat gluten-free but not being scrupulous about avoiding cross contamination. What situations do you find yourself in that you are getting cross-contaminated? Every cross contamination event will typically take two or three weeks to recover from. It resets the healing clock. By your own admission, you have prevented progress by not paying necessary attention to cross contamination. You are practicing a lower gluten diet rather than a gluten free diet and that will just not work.

3. I wouldn't be surprised if you have other medical problems in addition to Celiac Disease. The range and severity of symptoms you describe seem beyond the normal scope of Celiac Disease. However, until you are truly eating gluten free, you won't be able to sort them out.

3. You're right. I do have other medical conditions other than gluten or celiac. I got diagnosed as ALLERGIC to wheat barley rye and corn that includes gluten (not celiac, yet) but doc says i could be celiac too as i have partial iga deficiency, I'm at risk. Wheat ingestion can cause anaphylaxis apparently. Corn allergy is a pain... it's everywhere in salt in water in soap in alcohol in meds vitamins etc. The hunger and bloating are one of the symptoms i get when contaminated with gluten wheat barley rye or corn. I get extreme dizzy lightheaded sleepy tired nausea anxiety mouth ulcers constipation and hungry. Thanks for your help!  Hopefully this post and all my sufferings and symptoms can help someone connect their symptoms with these conditions. Hopefully no more medical conditions pop up as I am a genetic mess.